Not sure where to start
 

Hi.

I have a syndrome that is so rare it has no name. I have part of a chromosome missing and numerous other gene mutations.

This syndrome causes problems with metal absorption and excretion. Things like zinc, iron, copper etc. I also have chronic B12 deficiency and Vitamin D deficiency.

I am being cared for by a General Physician but in the past I have been under the care of a Neurologist, Oncologist, Geneticist and Metabolic Medicine Physician.

This syndrome can be treated by correcting all the deficiencies and excesses of vitamins and minerals and the thinking is that if I have treatment, I MIGHT, live a reasonable life span. This is not a certainty just a guess.

This syndrome has/is causing bone marrow failure (misdiagnosed as cancer and received 6 months of chemo), joint/cartilage degeneration (including disc rupture), and death of nerve cells in my spinal cord and peripheral nerves. It is also supposed to make me at risk of vascular problems like aneurysms (not yet, cross fingers) and skin problems (lack of pigment and early skin wrinkling/ageing). I have also had some brain involvement which caused an inability to control my blood pressure and I have had three episodes of generalised dystonia followed by an inability to talk which, thankfully was temporary.

My permanent disabilities are......leg hypertonicity and spasming, ataxia and nerve fatigue causing loss of strength very quickly.

I blame my neurologist for these permanent disabilities because he did bugger all when I was first referred to him. My Oncologist sent me to the Neuro when I first started having altered sensations in my feet. The neuro said "there is some slight abnormality in the reflexes, come back in six months". The Onc wasn't very happy so ordered an MRI which came back reported as normal besides bulging discs, bone changes, pinched nerves and empty bone marrow. None of which accounted for my symptoms.

Fast forward another two months, was having trouble walking, losing my balance, altered sensations to my hips/buttocks. Onc referred me back to Neuro who looked at the MRI and said "there may be something wrong in the spinal cord" and that my reflexes were now quite abnormal, to start using a walking stick and come back in three months.

Onc, not happy, so he ordered another MRI and did a lumbar puncture. MRI reported as "lesion in cervical spinal cord on previous MRI had extended into thoracic cord". Not bad considering previous report was normal! Lumbar puncture showed a couple of not so important abnormalities but it did test positive for 14-3-3 protein which is a test for CJD and indicates acute nerve cell death. Sent back to Neuro, who once again did nothing!

Ended up in ED because I couldn't walk or feel anything to just above my breasts (T4). Neuro admitted me and ordered some blood tests. While waiting for the blood test results I was told that I had weeks to live if I didn't get an urgent bone marrow transplant. I finally got an assessment by a physio and was told I was too unsafe to walk without a walker.

When the blood tests came back they showed the metal and vitamin problems. Despite correcting these nutritional problems I was left with permanent neuro damage. The Neuro was labelled a "genius" for discovering my problem but in my mind, he should have done these simple blood tests on my first visit and I wouldn't be permanently disabled. I have been through an awful lot and had a lot of wrong diagnosis and treatments over the last ten years but generally the doctors were trying their best. The Neuro, on the other hand, was too lazy and disinterested to write out a simple blood request form.

He is the one and only person in this whole saga that I detest. I'm not happy with the radiologist who reported my abnormal MRI as normal but my Neuro should have picked up that mistake too.

All in all, it will be a cold day in hell before I trust a Neurologist again.

Myelogirl,

Anger is normal and understandable, and venting is permitted.
The 5 Stages of Loss and Grief
These stages also apply to any life-changing event, including chronic illness.

The question IME is what to do with the anger and other negative emotions/feelings we go through. We can let them consume us, or we can channel/focus/use them in more constructive/positive ways.

The Japanese have a saying I try to follow: Fix the problem—not the blame.

IME, playing the blame game doesn't help. It doesn't accomplish anything, and it can be self-harming.

In the long run it doesn't matter how you got where you are (medically) because it can't/won't change anything. You are where you are and can only look/go forward from here.

I think there may be some folks here with some ideas on how to help you proceed and move forward. Some of that may involve seeking out a better neurologist—I don't know. There is good information here on vitamins, supplements, and nutrition. There are years of experience & wisdom of past & present members in the forums and archives.

Like I said, venting is ok. Is there any way anyone here can help you?

Doc

Thanks for the reply.

I thought I was past the anger until I recently needed a referral for surgery. The surgeon wouldn't operate until he got a report from my Physician and the "Neuro from hell".

The Physician okayed the surgery but the Neuro (who I have not seen in over one and a half years) vetoed the surgery with the reason being that "I had no chance of improvement in my mobility as the damage is permanent". I need to have the torn cartilage in my hip fixed because even if it doesn't help my mobility it will decrease the pain.

It seems just when I'm picking myself up, doing the physio and rehab, improving my general health and stabilising my disease, this Neuro comes back to haunt me. He has told me a number of times that I'm going to die a horrible death, he tried to have me sent from the hospital to a nursing home. He never offered any Occupational therapy referral or physio referral. I had to ask my oncologist to refer me to rehab because the Neuro thought it would be a waste of time. I tried to change Neuros but the new Neuro I went to just told me to go back to my old Neuro. My old Neuro won't take my appointments (hence one and a half years with no neuro input). The only time I tried to make an appointment in that last year and a half, his secretary wouldn't make the appointment and said he would ring me. He did ring a couple of weeks later and asked what I wanted. I told him I was having bad leg spasms and spasticity. He told me to take some Valium and there was nothing else he could do.

I didn't even realise I was angry until I asked my Physician for a referral to a Psychiatrist because I was depressed. When I saw the psych, he said that he didn't blame me for being angry because my medical care had been appalling (he read all my medical charts). I told him I wasn't angry, just sad and hopeless. That was a week ago and I'm starting to realise the psych is right. I do have anger that I'm holding on to. This is the very first place that I have ever expressed that anger. I've never even let myself think it before now.

It feels good to dish the #+*# on him. I realise that anger and blame get you nowhere and I don't intend to hold on to it but, right at this moment it feels cathartic.

I have already moved on by making an appointment with another surgeon but this time I'm going to say that I don't have a Neurologist and that's not going to be a lie. Old Neuro done, dusted and in the bin!

As the psych said....no one has the right to tell me I can't improve, that I'm not in denial and I'm not delusional, I'm simply an optimist.

I don't have a problem with anger; I have a problem with misplaced anger and pigeonholing/stereotyping because they can tend to lead/send us in wrong directions—sometimes to our own detriment.

I thought about spinning a story about a fellow I once met from Australia who deceived me/led me on, finishing with the punchline, "All in all, it will be a cold day in hell before I trust an Aussie again." :rolleyes: In fact, I've met quite a few folks from Down Under over the years, and had nothing but good experiences. But I think you get my point. I'd be surprised if there's anyone here on Neurotalk who hasn't had at least one bad experience with doctors (I know I've had my share :o), and some have had so many they could be considered "pros". :D

This perplexes me; :Ponder: I can only speculate. I've changed specialists before, and the only question that came up was whether it was for a 2nd opinion or "change of care" (i.e. changing doctors).

This second neuro obviously didn't want you for a patient for some reason. I have no idea what that reason was/might be.

I don't know if this will suggest anything or not...
A Letter to Patients With Chronic Disease

What I take away from it is that possibly (and again I'm just guessing) your case/condition scared this second neuro. He may have assumed there was nothing he could do for you, so didn't want to take you on. This would definitely discourage—if not depress—me, but I would not let it deter me from seeking/finding a neuro with the interest/knowledge/guts/compassion to take my case on. I went through something similar with both surgeons (for inoperable spine issues) and neuros (for chronic headaches/migraines). I went through a half dozen neuros in ~five years before I found one that actually knew enough about chronic migraines that he could—and did—help me. He was the one whose practice specialized solely in headache/migraines. There may be a neuro that specializes in cases like yours(?) I would think it worth the effort to find, if only to get an ok on the hip surgery. Pain can be an excellent motivator—that's its primary function. :p I'd also hate for you to suffer any more than you already have needlessly.

Back to anger, I don't know how familiar you are with the Kübler-Ross model (other than my previous link), so please forgive me if you know all this stuff. I know it's helped me—and many other folks here—tremendously to understand this about ourselves—knowledge is power. If you're not familiar with it, I encourage you to read up some more on it (as applied to chronic illness/your own situation) and use it to your own benefit.

There's no schedule or progression to these "stages"; they can come in any order (including 2 or more at the same time), last for any duration (hopefully we progress, but we cannot force it), and we may return to—or go through—some stages 2 or many times. Fun, fun, fun... :rolleyes:

Personally, I have trouble with the "acceptance" stage, because like you, I refuse to accept my fate as hopeless (though the articles say that's not what that means) ...and that's not denial either. ;)

Another pattern of chronic illness (chronic pain in particular) I've found it helpful/useful to be aware of in order to recognize and cope/deal with it is the vicious cycle. The vicious cycle invariably involves chronic pain and depression, and other symptoms depending on the individual and their condition(s)/illness (e.g. anxiety, insomnia, isolation, stress, weight control, etc.) Again, knowledge is power.

Doc

Thanks Doc. I feel lost Will Robinson.

While I do have chronic pain, it's not the pain that gets me down. It's the disability. The constant day after day struggling to get out of bed only to sit in the lounge and look at four walls.

My life is interspersed with medical visits and hospital visits but very rarely anything social. It's been almost 4 years since I could drive or work and I can't take my motorised wheelchair on the buses here. I either have to catch maxi taxis (very expensive and reserved for medical visits) or the community bus (requires booking many days in advance, but is a good service) or the ambulance. The ambulance won't take the wheelchair and I can't climb up the steps, so I have to go everywhere on a stretcher and have no independence at the other end.

You are right about stereotyping Neuros but there aren't many to choose from where I come from and they are a little community in themselves. The second one I went to was a lady Neuro and as soon as she saw my referring letter, that I wanted to change Neuros, her whole attitude changed. She changed from welcoming and pleasant to terse and abrupt. She never examined me and I was out the door within 5 minutes. It's not as if I make a habit of doctor shopping or criticising one doctor to another because I know that's instant Coventry. I had only ever been to that one previous Neuro, one previous Oncologist, one previous Physician (whom I'm still with). I had been with the same GP for over 20 years until he retired. I agree that she did say that she knew nothing about my illness and she specialised in MS but I keep getting told that I'm the only one with this disorder in Australia. I'm not going to find a Neuro who knows about my problem, so does that mean no medical care at all?

My old Neuro was okay until he presented a paper at the Oceanic Congress of Neurologists about my case. He would display me to his med students, residents and registrars. I was used for their exams. Then one day he just didn't want anything more to do with me. I don't think I did anything to precipitate this. I keep wondering what I did. He is an educated, intelligent, knowledgeable person....so it must have been something I did.....but what?

Anyway, I must move on and accept the fact that I no longer have any Neuro input and probably never will. I tried a couple of other Neuros but some aren't accepting new patients at all and a couple only accept patients that fit their speciality....eg...TBI, MS etc. the one I was interested in seeing, specialises in Movement Disorders but there is a 14 month wait for an appointment and only if he accepts the referral (you have to be interested in DBS).

You were right to pull me up about generalising about Neuros.....damn silly of me. Sometimes I think the brain damage is causing mood swings but again, maybe it's just an excuse for my behaviour. The psych told me that he wants me to go back to some kind of work. He said that I'm too driven and intelligent (blush) to sit staring at four walls all day. I have worked since I was 14 years old and now I'm 57. I chose to have a career over family, unfortunately I can no longer do that kind of work because it was physically active.

Sometimes I feel like nothing is ever going to change and I'm going to keep sitting in my chair staring at four walls and waiting for God. Then other days I feel that something is just around the corner and things are going to improve. If I didn't have the days of hope it would be awful.

I think I've reached the acceptance stage (just bypassed anger on the way, until now) but accepting reality doesn't mean accepting defeat.

Thanks for taking the time for a good debate and conversation.....I miss face to face banter. Always loved a good argument or debate. Oh, and I'm learning to accept truth and criticism (only took 57 years).

Are you able to go to a community pool? I would be lost without the pool at the YMCA. I get to socialize with all my Y friends. I am very fortunate to have a very supportive husband who is also disabled. I also love to read. It can be hard to focus on positives when you have lost your independence. I also find this website supportive.
Redcat

Hi redcat. I did try hydrotherapy which I loved but the Physio said that my balance was so bad that I wasn't allowed in the water without an assistant. They wanted me to go two to three times a week at $75 a session. It simply isn't doable.

I applied to go through the public hospital system but they assessed me and refused. They said they don't take patients with chronic conditions only people requiring short term post trauma therapy.

The ridiculous thing is that I have a Disability pension and Private Health Insurance but neither of these cover hydrotherapy. I am on a Chronic Health Management Plan which means I get 5 free physiotherapy sessions (in a lifetime) which I have already used. If I ask to be placed in a residential care rehab centre, I can get all the help I want at no extra charge but I love my little home, with my own bed and my two cats and a dog.

It's a case of whether I'm willing to give up what makes life worth living (my pets) to improve my quality of life (possibly). The short answer is NO.

I have no spouse or children but I do have elderly parents and a brother (mostly MIA). I did have a circle of friends but these have diminished over time because I no longer go out to socialise. I have one very good friend left but she has her own difficulties with family, so I don't vent to her at all. I have another not so reliable friend but she travels all over the world all the time and I'm never quite sure where she is. I think she's on a European River Cruise at the moment.....but I could be wrong!

I'm very lucky compared to a lot of people. I have my own home, some savings, a steady income, a good friend and I have always been okay with my own company and I feel reasonably well. I just have to come to terms with a body that doesn't want to work.

It's good you have the pool to look forward to and a husband to share with. Little things can mean a lot.

Thanks for elucidating. We may have more in common than being here. :D
I miss a lot too, and feel the frustration of disability/inability.

I didn't think we were arguing/debating; that wasn't my intent, anyway... And I didn't mean to criticize—just sharing some experience. Ah, the pitfalls of written exchange... You're correct, of course—face to face is better/clearer to read body/facial language and gauge reaction.

I wish I had more suggestion-wise for finding/getting care.

Doc

(I had to look up "coventry" in that context; apparently it's a British idiom we don't often use here.)

Hi, pets have always been an important part of my life too. Could you get a volunteer to go with you to hydrotherapy? To graduate from high school here in ontario canada students have to have so many volunteer hours. An alternative depending on affordability could be hiring a personal support worker. There are a few personal support workers who bring clients to the YMCA pool. Here one can deduct an expense such as this from their income tax return.
I don't want to assume just because you are Australian you can swim, but if you can you could possibly stay in the deep end. I stay almost entirely in the deep end. My body works best without all the gravity.
Redcat

Hi Doc, it just didn't occur to me that "being sent to Coventry", wasn't internationally recognised. I'm glad I imparted something new. My first positive for the day.

You're comment re: cold day in hell before you trusted an Aussie, was so relevant. That's why I assumed we were debating. I loved it. I love having my flawed thinking and the way I express them criticised. I mean criticism...in a good way, in a learning way, in a self improvement way. We don't always see ourselves as others see us and sometimes society is just too polite to set us straight. (and sometimes not so polite :eek:)

I also have the added problem of having a degree of Autism (proven by chromosome analysis) and need feedback from others to determine if my thinking, behaviour and reactions are within societies norm. That is part of the reason I wanted some reassurance (or not) from the Psychiatrist that my reactions and emotions were normal and justified. I was a bit shocked to find that I had skipped anger, in the process. I'm still trying to process that emotion, not sure I'm doing it right. I'm trying to hold onto it so I can resolve it but it keeps seeping through my fingers and leaving nothing but despair. I feel anger is a positive emotion and despair is lack of emotion. I'm pretty sure I'm wrong but I'm willing to learn the truth.

You are very articulate Doc. Do you work in education? Journalism?

I used to be a research assistant in the healthcare setting. I never did anything brilliant, just the hard slog of data gathering and cross referencing within given parameters. Others would set the task and I would do the practicalities including consenting participants for research studies etc. I enjoyed it even if it was a tad undemanding and at times, boring. I rarely saw the results of the research. The data etc was sent off to some University or other to interpret and I would have moved on to something else. It involved a lot of walking and delving into files in rooms full of archived material. Ahh, I can smell the dust, age and mould as I type.

I can't believe I used to love "Lost in Space". What was the robots name again? I remember he was always saying "warning, warning, warning". I need someone like that in my life.

Do you have a thread Doc? I feel I'm at a disadvantage. I understand you have pain and disability and have had the medical run around but I don't know if you have given your history elsewhere on here. Maybe you have kept that private and I shouldn't be asking.

Nice to chat.

Bye.

Hi redcat. I hope you're doing well today.

I hadn't thought about asking for a volunteer in the pool. That's not a bad idea. Thanks. Last time I went I was still able to get out of the pool by myself with some help but now that my legs don't do what I want them to, I may need a hoist or something to help me out. (I'm not thin......understatement). I didn't notice if the pool had that kind of equipment but bearing in mind it is for hydrotherapy I'm sure it must have that kind of equipment somewhere.

My two cats and a dog are my reason for living. They are the reason I struggle out of bed every morning, they are the reason I worked hard at physio so I could come home from hospital. I used to have two dogs and one cat but my little girl (Teeny Dog) got sick two weeks before her 13th birthday. She got sick one day and was euthanised the next. Very quick and thankfully not painful. It turned out she caught a virus off fruit bat saliva from half chewed date palm fruits. She got progressive paralysis until her breathing was starting to be affected and so I pulled the plug. (Sounds a lot easier than it was, it was 20 months ago and I still miss her every day). A few months later my father gave me a little kitten from the local Council rescue pound. She had had a hard life until then and now I promise her a good home for life. So now I have Gidget (11 year old Kelpie), Betty (10 year old domestic cat) and my new girl, Baby Boots. They all get on well together except when the cats try to pinch the dogs bed. Gidgets basket is her territory and it's a brave cat that tries to lie in it.

Both cats like to play "catch the dogs tail" although Gidget isn't as keen. I find it very entertaining.

Redcat, have you listened to any Toni Child's music? I find it touches my soul.

Now for the challenge of vacuuming from my wheelchair....love it :(

Could also be my lack of culture. :rolleyes: :o

Asperger syndrome or something else? A few of my in-laws have that; my side of the family is just socially inept. :rolleyes: Help me out here—does chromosome analysis actually prove something like that, or just indicate a genetic predisposition?

Thanks, so are you. I've worked in education and written professionally (among other things). Alas, my skills in those areas are not what they used to be. The ravages of illness and a few medications have taken a toll. I struggle a lot with vocabulary, usage, and grammar—particularly in choosing words to convey my meanings, hence I use a lot of "/"s between words/terms (and sometimes they just mean "and/or")...

That blundering bungling bubble-headed booby? He was just called, "Robot". :D
You can be the first kid on your block to purchase one (full-size replica) of your very own for only USD $24,500!
http://www.lostinspacerobot.com/index.html
(No affiliation—I just came across this site while looking for a clip of him on YouTube)

Doc

Hi Doc. I'm on a Forum for people with bone marrow diseases as well and one of the Forum members is a small town newspaper publisher/editor and dogsbody. He once wrote a sentence I just could not decipher and as he was usually very easy to understand, I assumed he was using publishing jargon.

I quoted the sentence back to him and apologised for my ignorance because I didn't understand. He was embarrassed because he had unwittingly inserted an advertisement for a sewing machine attachment he had been checking out for his wife.

It's a bit late here and my antispasmodic is kicking in so I'll get to the point before I become incoherent.

I have a part of chromosome 15 q missing. It's actually called del 15q11.2 and there are break point references as well. There are something like 500kbs of genes missing. This specific chromosome deletion is associated with autism, aspergers and schizophrenia. Some people with this deletion are either not affected or mildly affected and some are profoundly disabled. They have not been able to determine why it affects some more than others. I have applied for and been accepted into a research study being conducted by Associate Professor Brett Abrahams (geneticist) at Yeshida (sp) University in New York.

I'm still dithering at the moment though because I need to persuade one of my friends to provide a saliva sample for DNA and to undertake Brain Game testing (Lumosity). This is because they need people without the deletion for comparison/reference points. I don't really have anyone who is willing to participate. To Dr Abrahams credit, he invited me to participate anyway because I have the exact gene break points that's he's studying.

I really must stop procrastinating and sign the consent form and send it back.

Anyway, I have always been socially inept and communicate better in writing than verbally. I quite often can't think of the word that fits a certain situation at the time I need it. I tend to be blunt even though I'm not trying to be rude. I can read people's emotions and I can read facial expressions. I do feel sympathy and empathy although I find it hard to express it. I don't like physical contact very much and I have to work very hard to do the "let's have a group hug" thing. I always worked better by myself than in a team. Those touchy freely, group therapy team building weekends used to freak me out. I never once in my entire working life attended a social function that was work related. No Christmas parties, no baby showers, no retirement parties etc. on my last day at work when I retired, I didn't tell any one I was leaving and at the end of the day I just popped my work mug in my handbag and walked out and never went back. I had been in the same job for the previous 26 years.

I was once referred to a Neuroscience Clinic for assessment to determine a specific diagnosis but when I hadn't heard from the clinic for 6 months, I rang them and found out that they had decided not to accept the referral. Consequently, I have never been assessed. I have just added my chromosomal abnormality to what little insight into my own personality that I have and came up with mild Autism or Aspergers. I don't think that my life will change with an official diagnosis but if participating in this research study reveals something useful for others it will be worthwhile.

Doc, I hear you when you say that you feel as if you are not quite as sharp due to meds and damage. My cognition is definitely deteriorating. I have done a couple of IQ tests in the last few years and my IQ is definitely declining.

Really, have to sleep now. One very beneficial side effect of antispasmodics is the sedative effect.

G'night.

'Dogsbody,' eh? Oh, this is going to be FUN! :D

It's the new hit game show that's not just sweeping the NATION—it's sweeping the GLOBE!
(Drum Roll, please...) Ladies & Gentlemen.... Welcome to IDIOMS!

I used to communicate much better in writing than I do now, but I've always communicated better verbally.
Same here, and it applies equally to verbal & written. It's like I know the word I want to use, and I know that I know it. I haven't forgotten it; I just can't bring it out—like it's hidden in a fog or something. Sometimes I know what letter it starts with, or I can see part of it, or I know a word that sounds kind of similar, but not quite close enough... It's infuriating! :hissyfit:

At least when I'm composing/writing something I can stop and bring up a... dang, what's another word for 'thesaurus'?

Uh-oh... I used to design & run some of those... :Doh: Not so much the touchy-feely type—more the cooperative effort activity type—it depended on what the client wanted, and touchy-feely wasn't (isn't?) politically correct at Megacorp here.

Haven't slept in two nights myself. Pain in my neck has kept me up, and I ran out of amitriptyline (low dose for sleping with chronic pain); it's due any day...

Doc

Oh boy, MENSA!

I was no where near that to start with let alone now.

I have just returned from my physio session. The physio is adamant I need hip and back surgery. He said that even if I don't gain any extra mobility from the surgeries, I will have less pain. Now to convince the surgeons :mad:

Doc, I know I shouldn't but I have a sense of satisfaction about what happened to the Department I used to work in.

When I worked there I was always amazed at the amount of effort everyone put in, to avoid doing any work. Even my Manager. They really were incredibly lazy and unproductive. I was happy enough to go to work and do whatever needed doing, I figure if I'm being paid to do a job I may as well give it my best shot. There is nothing to lose by being conscientious. In fact it's quite fulfilling.

Within 6 months of my retirement my old Department was disbanded. No one retained their jobs. I keep telling myself I should feel sorry for them having to look for new jobs in this economic environment but I can't help being a horrible person and quietly rejoicing. For years I did the day to day slog and my Manager took the credit. I didn't really mind at the time because I have never been ambitious. I just wanted a secure job that was mostly satisfying. I never once asked for my name to be referenced on the research documents. My Managers name was all over everything.

I have had one lucky life. Born in a great country in a stable family. Grew up with boundaries and values and principles. I worked in a job I didn't hate. I bought a house at the bottom of the market and sold at the top. I'm financially secure without being rich.

If only my body would co operate, I would have it all.

Hope you get some sleep Doc.

IME, it's an ego-massaging club for people who test well. :rolleyes:

Doc

Hi Myleogirl,
I sent you a p. m., I will look up Toni Child's music.
Redcat

Where to now?
 

I visited my GP yesterday. The Physio report is that my back has not responded to treatment and Physio is no longer a treatment option. Tick, another treatment plan out the window.

Now I really don't know what to do or even if there are any other options available. Apparently, it's not even worth having a new CT because no matter what it shows, I can't have treatment.

On top of that I had a fingerprick blood test for anaemia and my Hb is 95. It was 107 when I went into hospital for my usual treatment which is meant to stop my blood counts from falling. So, something has gone wrong there. I had to have an official laboratory test because of the low Hb and the GP will ring me on Sunday (he is Muslim and works Sundays instead of Fridays) with the results. It looks as if my bone marrow is failing again. Been there, done that....still alive! I can't count how many blood transfusions I've had. It would be in the hundreds.

My GP is a wonderful doctor...caring, smart, quick and best of all he has a great sense of humour. When my old GP retired I searched for a new GP that I could "click" with. After a couple of false starts I found Talib. At first I thought he was very quiet and reserved but extremely knowledgeable but it's been over a year now and his sense of humour is much more evident. I think he's just a little shy at first. Both my parents left their old GP and transferred to Talib as well and they are both happy with his care.

It's essential to have a good PCP on your side.

Yesterday I noticed that when I was standing up, I had a lump over my spine around waist level or little lower. It felt about two inches long and protruded about half an inch. At first I thought it was a lump of fat :o then I thought it was an inflamed muscle but there really aren't any muscles right over the spine. Last night I tried to find it again but it wasn't there when I was lying down

So I went for physiotherapy this morning and I mentioned the lump to Simon. He tells me to lean forward in my wheelchair and yep, he feels the lump. I feel it then but it's only sticking out half as much as when I was standing. So I stand (with Simons help) and thar she blows...big lump.

Simon says he never felt the lump before because he has always examined me lying down. Anyway it turns out the my L3 vertebra has moved backwards on my L4 (retrolisthesis) and moves backward and forward depending on my posture. In my case (because of my gait problems and previous bone grafts 36 years ago) the only treatment is surgery and that isn't really an option because of my medical condition.

So there we are, another unfixable condition to add to the list. At this point in time pain killers sound good but I still can't overcome my reluctance to have them. I'm frightened I'll develop a tolerance and then when my death approaches and I'm in pain, the drugs won't work.

I saw the psychiatrist today. I've been looking forward to my visit so I could discuss my fears about increasing disability and end of life decisions.

Well, he fell asleep, then he'd wake up, make some out of context response and then fall asleep again. It was a fifteen minute appointment and he slept through most of it.

WTH?

That's just not right. :mad: I'd be inclined to consider finding a different shrink, and even reporting the guy to whatever authority handles physician complaints there, but I guess I'd calm down and think it through rather than acting rashly. Then if I still felt the same...

I did have a doctor once who put things in her report that I never said and that never happened. I wound up writing a letter correcting all the factual errors in her report and sent a copy to her supervisor (at the hospital). Something like that may not apply here—few doctors outside a hospital setting have supervisors.

Doc

I agree with Dr Smith, you need to find a new psychiatrist. Unless your psychiatrist has a valid reason for his behavior. If he doesn't have a supervisor you can always contact his professional association, college of physicians. I really think that you need to report this bizarre behavior.
Best of luck with everything.
Redcat

He made me feel good. I had the best laugh last night. It was the funniest thing that's happened to me in a long time.

This is a private psychiatrist, so no supervisor.

I think he was truly very sick so I hope he's okay. He seems a genuinely nice person.....just sleepy :confused:

Anyway, he told me that I don't have a mental illness except a mild clinical depression caused by my brain damage and we are going to retry anti depressant drugs until we get one that's okay.

I don't think he expects me to require too many more visits anyway. He's going to visit me next time I'm in hospital....probably towards the end of next week. At least if he walks in he has to be awake!

I've just been to the GP and she felt the lump on my spine and ordered an MRI. She seemed a bit out of her depth. She said she thinks I have a hernia.

No, I don't mean a herniated disc.....I mean a hernia. I've never heard of anyone having a hernia over their spine.....is it even possible? She said that she thinks I DO have a herniated disc that has moved the broken portion of my vertebra backwards and that has herniated out through my muscles...WTH is that?

All I know is that the lump is larger today than it was last week so whatever it is, it's getting worse.

All hernia means is a bulging or protrusion of an organ or connective tissue that shouldn't, so that can cover a lot of ground (so to speak). So yes, I think it's possible.

http://www.merriam-webster.com/medlineplus/hernia

http://en.wikipedia.org/wiki/Hernia

The increase in size could be due to inflammation/swelling. Can you try an NSAID (e.g. aspirin ibuprofen, naproxen, etc.) to see if it helps the inflammation/pain?

Doc

Photo of lump
 

Thanks Doc. I looked up lumbar hernias and saw that there were two different types depending on whether they were superior or inferior. However in both cases they were always quite lateral to the spine.

My lump is pretty much over the spine. I don't know if you can see the lump on this photo. (Pardon the fat). It's getting larger by the week and my back feels increasingly like it's going to snap off and that I have to bend forward to stop it from falling off the vertebra below. The scars are from spinal fusions I had done 36 years ago L4-L5-L6 (S1 was sacralised making 6 lumbar vertebra). Due to the angle I had to take the photo, it looks like it's mainly left sided but it does extend over the midline and to the right as well.

Both the physio and the GP say it's definitely solid and not muscle or lipoma.

I can see it, but have no idea what it could be. If I had something like that, I'd go to my spine doctor, who would probably order an MRI, but do an x-ray first because he can do that right in his office, see whatever it might show in minutes, and take things from there. (X-rays are generally quicker anyway) If there's bone involved, it would definitely show up on an x-ray; MRIs are better for imaging soft tissue.

Doc

Yeah, it doesn't look right does it?

The problem is I don't have a spine doctor. I haven't had a back problem since those bone grafts 36 years ago. Even when the CT showed a spondylolisthesis at L3-L4 a couple of years ago, it didn't hurt so I never saw anyone about it.

It takes months to get an appointment to see a neurosurgeon or orthopaedic surgeon where I live. In the meantime I just have to wait and see what the MRI says. I would much prefer to have a plain erect X-ray. I rang the Radiology Clinic to book an appointment and they won't accept a referral from a GP, only a specialist. Some clinics will accept them but the nearest one is over 50 kilometres away and I can't drive and have no one else to drive me.

I'm going to ask my physician to rewrite the MRI referral when I go into hospital next week and hopefully I can get it done while I'm an inpatient. (He might even just order an X-ray).

I don't want to sound like a drama queen but having had a history of cancer and having had chemo which in itself causes cancer, I just have this little niggle at the back of my mind that I might be in a spot of bother.

For that matter, as long as you're there as an inpatient, mightn't they have a specialist or 2 check it out? (I'd point it out to everyone who does rounds—squeaky wheel and all... ;))

Doc

MRI image
 

I had my MRI on Monday and my Doctor should get the results tomorrow. I looked through the films and really have no idea what I'm looking at BUT this doesn't seem right.

Are you referring to the light-shaded mushroom shape to the right of center? That's the lump we're talking about? The image is a bit small for my eyes to see much else, and I'm not proficient with MRIs. I don't know what that is/could be, but I agree it doesn't look right (from MRI imaging I've seen here in the past).

Doc

Yes, that's what I'm talking about, along with the increased blood vessels in the fat over that lump.

I've been to the GP to get results. They say they can't find anything. They don't even mention my previous bone grafts or the spondylolisthesis (that they diagnosed two and a half years ago). The only thing they were interested in was the "patchy bone marrow" which is in keeping with a haematological malignancy. Well, considering I've had chemo for a haematological cancer that doesn't take a genius to work that out, especially when it's in the clinical notes.

As I said to the GP, how can you have a visible and palpable lump that is symptomatic but not see it on a scan?

Anyway, I've been offered no further testing but just been told to take Morphine which I have refused. Starting to take narcotics for undiagnosed pain and pathology is on the slippery slope to oblivian and I'm not going there yet. I'm not going to allow my health care professionals to fob me off without a diagnosis! It's not as if they can say it's all in my head (I bet they're disappointed they can't use that old Furphy) because it quite obviously isn't!

I've rung the radiology company and asked them for my scans to be given to another radiologist for a second opinion but they have refused. They suggested I take them to another radiology company for that second opinion. So I've rung 3 other companies (we don't have much choice here) and they've all refused to look at them. It's a closed little community where they protect each other's back, it seems. I would have thought offering to pay a good amount for a second opinion would have worked but no, one radiologist won't undermine the findings of another.

When I first got sick I had an MRI which was reported as normal except for arthritic changes. 3 months later when I was having trouble walking I was sent for another. Same result....normal but for discs and arthritis. 3 months further I couldn't walk at all, for another MRI. This time the report stated that the lesion in my cervical spinal cord had extended into the thoracic cord as far as they could visualise and was worse than on previous scans!!! Worse than previous scans? THEY WERE REPORTED AS NORMAL!!!

I was livid. I went and complained about the incompetent radiologist who misread my first two MRIs. I never even received an apology. It was because of this incompetence and my moronic neurologists inaction that I became permanently disabled. If I had been treated earlier, the damage was reversible.

On its face that sounds actionable. Professionals seldom offer apologize because in many places an apology is tantamount to an admission of guilt/wrongdoing. It's not always the individual's choice; attorneys, insurance companies, ets. often issue edicts against such.

From the image, I don't see any hardware, and the disc spacing appears (to my untrained eye) to be unremarkable.

The... whatever it is—doesn't appear the same as bone. There appear to be three shapes above the object but none below it; I don't know what they are.

Narcotics are not offered lightly. They're acknowledging your physical pain, and that's something. I won't try to sway you on this, but pain is something I know a little about from personal experience and many years involvement in/with chronic pain support groups. What I know is that pain medications can make a huge difference in quality of life when taken/used responsibly, and bonafide pain patients seldom run into the problems abusers do.

Doc

I understand the reason why they don't apologise BUT, they (can't remember who) did some research and discovered that a vast majority of people who had been injured through medical negligence, incompetence or ignorance, would have been satisfied with an acknowledgment of their distress and an apology. It was when these weren't forthcoming that people became angry and started legal action.

I would never take legal action myself unless it was to prevent someone else suffering the same fate. I do believe in giving feedback when they've done something wrong or otherwise they might never learn.

Now, for the news.....I rang my physiotherapist and told him about my MRI report and he didn't believe that the report could be correct. He had seen the previous CT report which said I had a spondylolisthesis at L3/L4 and he said "they don't go away". The physio told me that when he felt the lump he thought I had a soft tissue tumour of muscle. He said he didn't want to say anything to me because he was sure the MRI would find it and my doctor would deal with it.

I didn't go into hospital last week like I was supposed to because my mother became sick with suspected internal bleeding. She has improved and I should be able to have treatment in early December, so I'll ask my Physician to refer me to a neurosurgeon while I'm in hospital. In the meantime I've been given Voltaren Rapid and I'll see if that helps the pain.

It may, but it can have some nasty adverse/side effects too. I wasn't familiar with it, so I just spent some time perusing posts about it here, and the Wiki page.

That's the problem with pain meds; they're either dependence-producing (opioids) or organ damaging (NSAIDs).

Doc

Dear Myelogirl,

I can understand your frustration with the readings of your tests. I fell and broke 5 ribs. I went to the ER and the x-ray tech told me, yep, you broke some ribs, the ER doc said I broke 5 ribs, and then the radiologist reading the x-rays said NORMAL, no fractures, in his report. I contacted him and asked for him to review them again. Again, he said NO fractures. Several weeks later, I had follow-up x-rays as my ribs were not healing. Different hospital. Radiologist reported 5 fractured ribs. A subsequent CT chest scan also showed 5 fractured ribs. The original radiologist would never concede that he was incorrect even with overwhelming evidence.

Sorry about the long story just to show that I do understand how frustrated you were with your report.

I've learnt to take most things a doctor tells me with a grain of salt. In the end you have to be responsible for your own health and treatment but......it can be like pushing .... up hill. I don't think the radiologist could even count, I have 6 lumbar vertebra instead of 5 but he didn't notice that either. Oh well, time to move on and do as much as I can for myself and forget about expecting any medical help.

Doc, I know the Voltaren Rapid is a bit nasty. I'm on the maximum of 50mgs three times a day too. I notice the information leaflet says to take for a maximum of one week. That might be why my GP wants to see me again on Monday. It seems to be working because that diffuse achey, muscle pain has diminished and I can now feel a specific painful spot which is on the right side and higher than the lump! Sore spot on right, lump and ache/pain on left?? The Voltaren is also helping with the pain from the torn cartilage in my hip so that's an unexpected bonus.

Surprisingly, my GP is keeping me on massive doses of Voltaren Rapid....50mgs three times a day and I'm also on Diazapam 2mgs three times a day and Alprazolam 0.5mgs two times a day.

I'm going to be completely stoned! It looks as if my Neuro disease is getting worse and my muscle spasms are getting more widespread and are now in my back constantly as well as my legs and I've always had intermittent problems in my hands too. It may be just a matter of time before it reaches the diaphragm......what to do then?

I think it's best not to dwell on the what ifs.

Hopefully it won't reach your diaphragm. At least it sounds like your GP is trying to keep on top of your pain, not that is any consolation. I really don't know what to say , it must be very difficult to be in your situation. I hope you have support.
Redcat

Thanks for that Redcat.

I'm booked to have surgery on the 16th December and today the surgeon says he wants me to stop the Voltaren and start having Morphine instead because it has fewer side effects on clotting and stomach ulcers, so it's back to the GP and agreeing to the Morphine which I refused last week....frustrating!