Does anyone have medical input for me
 

I have a list of ailments like so many of you. This last year has been a rapid decline in my health.
Some may know that I have been on high dose prednisone for almost 4 months and possibly another 3 months more.

The biggest change in the past 2 weeks is that my left hand is numb 24/7 from the ring finger to pinkie and is quickly spreading down the outer side of the entire hand, and in the last few days it is moving down to my wrist.
(I could feel my fingers go numb periodically for awhile now but is moving quickly lately).

My feet are becoming numb and the left side of my jaw is now having intermittent times of numbness, not constant yet, but it just started.

Does any of this sound familiar to anyone. I am beginning to get quite anxious since things seem to be progressing at a fast pace lately and my appointment at Mayo is not for another 6 weeks.

Any suggestions would be greatly appreciated.
Thank you all,

Judy

((((((Judy)))))),

The numbness in the outer two fingers and the outside of your hand sounds like the C8 dermatome. Could be a problem with disc compression in your back just at the beginning of the thoracic area.

It could be thoracic outlet syndrome (http://www.nismat.org/ptcor/thoracic_outlet/. There's a whole forum here for that http://neurotalk.psychcentral.com/forumdisplay.php?f=24

The feet and the jaw numbness indicate something else going on though. What are they thinking -- MS?? I have numb feet and hands with MGUS (monoclonal gammopathy of unknown significance) which may or may not be a precursor to multiple myeloma, a bone marrow cancer.

Why are you taking so much prednisone??

Judy, I know how hard it is to wait (when you KNOW something is not right). I went through all that waiting for the diagnosis of the MGUS -- only to get diagnosed with something that has the words 'unknown significance' in its name :rolleyes:

The thing is, Judy. Whatever *IT* is. You have it now. You'll have it in six weeks (unless it goes away -- which is what I'm praying for). The difference between now and six weeks is that you'll have a name for *IT* (MAYBE).

What you need to do:

This is based on my own history. And remembering how many incompetent, insensitive doctors I had to deal with during that period. I also have to get a blood test every 6 months that will tell me whether or not I have moved closer to the multiple myeloma diagnosis. Waiting for those test results every six months used to be horrendous. Now it's not. I don't even bother calling for the results anymore. I get them on my next visit.

Well .. what you need to do. Define what you are so afraid of so that you can talk about it with your doctors and with your family and friends.

Make a plan for how you are going to start NOW with taking better care of your SELF. Better nutrition. Better rest. Better relaxation techniques. What can you add to your life NOW that will make your life in six weeks BETTER??

BIG HUGS. Talk about and write about what's bothering you -- it makes the time go faster. There's tons of us who have way too much experience waiting for either diagnoses or waiting for test results -- we can help you through this.

Barb

Barb,
it is so strange that you mentioned the things you did. I am on the prednisone for what was originally diagnosed as a left eye orbital pseudo tumor. After starting at 65 mgs of prednisone ( I am a petite person, or at least I WAS, LOL) in Sept, I am now down to 22mg,

I was seeing a neuro ophthalmologist and after 2 months, she said that she had never seen a case like mine. She said that I had so many medical issues that I needed to be seen at Mayo. She is one of many specialists that have directed me somewhere else.

I am just 50 and have osteoporosis with bone density of a 70 year old. You probably know what pred does to the bones. Someone hugged me a short while ago and I cracked the cartilage in my sternum and a rib. (unfortunately it was not a passion hug, drats)

Three weeks ago I picked up a fairly heavy bag to put out for garbage day and my lower back has been unbelievably painful since.

I went for my regular appt with my doc today. She gave me orders for a lumbar spine x-ray plus the pain meds that give me some relief. She has been my doc for 25 years and she questioned me about using so much pain med. I take 500 mg vicodin and never exceeded my three a day, only because I was so afraid of not getting a refill. The med gives me about 2 hours of tolerable pain. I think when she saw me today, she knew this was no game playing.

I have:
graves (even thou I had a thyroidectomy at 39 yrs)
hyster three months after thyroidectomy, still 39 (talk about a hormonal nightmare, lol)
myasthenia gravis (positive and negative test results)
RLS and PLM
sleep apnea
severe osteoporosis (secondary also)
orbital pseudo tumor
double vision/ chronic blethritis and eye inflammation
rapidly increasing neuropathy of hand, jaw and feet
chronic low potassium
chronic high cholesterol
had hyperparathyroidism ( haven't had time to deal with that lately)
mild atrophied of right kidney
Barrett's esophagus
Nutcracker esophagus (spasming, too much pressure)
several types of ulcers, come and go, duodenitis never goes away
way too many dental problems since I am a tooth fanatic
wounds do not heal easily of late
degenerative shoulder (2 surgeries)
osteoarthritis of knees (2 surgeries also)

Geez, that is all I can think of now, but since I have been on this site, I have realized that my problems pale in comparison to others. I just want to be diagnosed after about 5-6 yrs of decline.
But my heart goes out to all on the neurotalk. I think it is the best thing that has happened to me.

I have been off of work for a month, live alone and need all of you more than you can imagine.

Great big hugs to you and I hope the info I gave can help you or anyone to enlighten me.

Thank you so much for your insight. Those affected do know more than the doctors at times. With a site like this there is bound to be someone who actually feels what we feel and can diagnosis, or at less help he docs.

After all, they are human, and working with them in surgery shows me first hand what they do and will do for the life of others. They never cease to amaze me.

I have seen many a day when a surgeon is in on one case scheduled for 2 hours and after 8-9 hours, or more comes out and the person is going to make it. They rock,

There is the good and bad, but I have the joy of working with the best.......

Great big hugs and thank you:)

Judy

((((((Judy)))))),

http://chocolate-moose.p5.org.uk/MIN...bears-mini.gif

Have they done a full MRI (or a least an x-ray) of your full spine?? Now that I know about the osteoporosis, you could have something going on in C8.

Know what you mean about "problems". My son says I said send my body back to the manufacturer. I tell him that factory went out of business :D

It's a good thing our parents and grandparents don't tell us about all this SHIPS, we'd never want to grow up :p

You know, Judy, it's a good thing (excuse the Martha-ism) that you're going to Mayo. I had the same primary care physician for over 9 years. She was actually the director of the women's health center. Sometimes they get so used to seeing you that that don't really SEE YOU anymore. Sometimes a fresh viewpoint can move 'things' along.

I'm hoping you get GOOD ANSWERS in 6 weeks -- answers to questions that you have but also solutions too. I, personally, feel that when we know what we're dealing with, it's easier to cope with it and easier to come up with a plan. This 'limbo land' thing is for the birds (I don't even think they'd want it).

Writing. Talking. Getting your feelings OUT or at least down somewhere (I like writing when I'm trying to cope with something difficult) helps immensely. We people who have landed here at NeuroTalk moved on from the old BrainTalk. It's a unique kind of support that you get here. I used to hang around the Child Neuro forum a lot on the old forums. We all can cope with a lot when we've got people that HEAR us.

BIG HUGS (gentle ones) :)

Barb

Barb,

You pretty much summed up a majority of my feelings. I am not afraid of what Mayo has to say.......................just say something. I want to hear " Oh yes, I have seen this before and it is.........

Things happening so rapidly does cause me concern. Up until a month ago I could still work. (Well, sort of, LOL) I used a lot of vacation days because I had many bad days. I have a chronic illness (FMLA) on file so that I do not lose my job and the days don't count against me.

My work has been fantastic and that is one of the greatest of my fears. That I will never be able to work again. I know that many of you are at that point and if that is the case for me then I will need all of you to help me with coping skills. But that is a bridge I will cross when the time comes.

I will let you know what the x-rays show. The order is for the lumbar spine, but if this continues, I will ask for a full spinal MRI.
Thanks for your input, every bit helps and just venting.

Gentle hugs back to you,:)

Judy

Another question?????????
 

Hi,

My entire half of my left hand is now numb and has moved to my wrist, about where my watch would be.

This has progressed in the last week and seems to be advancing quickly. i had the lumbar x-ray Friday, but I don't know the results and I don't really think that an x-ray is going to show anything unless there is a fracture or disc problem.

My feet are beginning to tingle more often and the left side of my face is still mild and intermittent.

If I put my hand in water hot/cold it intensifies the tingling and it hurts.

Does this sound familiar? Why all of a sudden is it moving so fast.

Any more advise? Should I wait till going to Mayo in January and let them run their tests?

Thanks,

Judy

((((((Judy)))))),

http://chocolate-moose.p5.org.uk/MIN...bears-mini.gif

Are you gonna get the MRIs done before you go to Mayo?? If you are, make sure they're doing your head too -- which they should be doing anyway if they're ruling out MS (looking for lesions).

You want to get ESR and C-Reactive Protein blood tests to help rule out infection.

And finally, it's probably a good idea to do nerve and muscle conduction tests on your hands and feet and forearms and forelegs (is that a word??). Also nerve conduction testing on the mental nerve (that's the one for your chin). Have you had any recent dental work done in the same region (on the same side) that you're getting the numbness on your chin??

I'm no doctor. I'm just somebody like you who's been through 'stuff'. Any tests that they do now will still be 'current' for the Mayo work. They'll also probably save some time and testing at the Mayo.

Now, this is just based on my own experience, but, because of the numbness, I wouldn't wait to get that testing done. Mayo can always do MORE if they require more. The nerve conduction tests will show how much of a problem we've got in that area.

I know what you mean about the sensation being all screwed up in your hand. I remember when I couldn't touch anything cold or smooth. The cold was really painful and the smooth was just so radically WEIRD, it freaked me out :D I thank G-d that I found Effexor XR -- I couldn't open jars or use my cane -- just too painful. I still have the numbness because of the blood condition. But, I don't have the pain. And my strength is back.

I'm praying for success for you too. BIG HUGS.

Barb

I have RA and I too have many of the symptoms that you have described.... have YOU ever been to see Rheumatologist? - he might be able to help.

teeth
 

Barb, yes........... i had an abcess under a front veneer, it had to stay open forever because it won't heal. it still is sensitive to heat, mostly cold and that was at least 7 mths ago.
Every time i see my doc, we are dealing with a new issue, so we never get to concentrate on one.
I will write down what you have said, she probably would appreciate it.
Thank you so much,
hugs to you,
judy

thank you
 

Thank you for your input. At this point in timw and how fast things are moving, i think the docs can use any help they can get. I will research that area because i never have.
Thank you so much,'
Judy

Hi all,
Is anyone familiar with the drug, DES? It was used by woman to prevent miscarriages around the 1950's. It is a synthetic hormone and later they found that it caused female problems for the daughters born of the woman who took it.
I am a DES baby and in those days woman didn't know they were pregnant as quickly as now so I have no idea how long my mom took it after I was conceived.
They are still researching the medical issues that it created. I am the youngest of five and the only one that my mom took the drug with. I am also the only one in the family that has had vast medical problems.

I often wonder if any of the many problems I have pertain to that drug.
Does anyone know anything about it? I would be curious if there is any correlation and if anyone has suffered from strange maladies and was subjected to DES.

This would be the site to get some statistics started.

It is on the list of things that I will be telling the Docs at Mayo. Who knows, it may mean something to them and perhaps they have seen similar problems with woman who where exposed to it.

It would be interesting to see if anyone knows of this drug and has some input. Maybe we could help with the research and have a cure named after Neurotalk. How cool would that be??? :icon_wink:

Thanks,
Judy

Hi Judy,

Just wanted you to know I'm thinking of you and that IMHO, I do believe some of your problems stem from your spine. I, have a bad spine and some of the symptoms you describe, I have experienced.
I hope you find answers soon.
Good luck,
Linda :)

I have only seen two
 

DES women. Both had reproductive damage and could not have children.
DES typically leads to early cancer, and non functioning or malformed
genitalia.

In males the damage was visible as a rule. In females it can be hidden, and
only found after puberty and/or with examinations.

from http://ic.ucsc.edu/~flegal/etox80e/S...s/hormone.html

I think DES has only been studied on the reproductive system of those
borne to mothers who were given DES.

Mrs. D,

I agree, the studies have been limited to the female male organs mainly. I had a ovarian cyst rupture when I was 32 and the remainder of the tube and ovary had to be removed, then had a total at 39. Fibroids, endometriosis, and cysts.

For quite a while now I have wondered if the DES has not perhaps contributed to my endocrine melt-down and some of my other problems. Hopefully with all of the info I have prepared for the docs at Mayo it may help with a more rapid diagnosis. They compare DES to the other drug that they gave to women when all those children were born with gross deformities. How sad that they used woman and unborn babies to experiment on.

It is so good to be able to bounce things of people who have all different kinds of ailments and do their research. Unfortunate that anyone on the site has to have any ailments, but what a better way to put all of the knowledge to good use.

Such big hugs to you,

Judy

I

Thanks Linda,
I appreciate the kind words and the input. I have lost the muscle mass in fat part of the outer palm just noticed yesterday. It sort of just hangs there. I think you are on the something.
Hugs to you,
Judy

x-ray results
 

Hi my helpful friends,:You-Rock:

I picked up my x-ray results from med. records today:

mild apparent chronic compression deformities of L3 and L5

Mild degenerative disc disease primarily at the L4/L5 level

small anterolateral osteophytes scattered throughout the lumbar spine

Actually, I find this to be some of the better news that I have received lately. I see the doc next week and we will go over what I can do. The only thing that bothers me that in my on-line research. They mainly refer to the elderly (80) and I am ONLY 50. :rolleyes:
There are so many wonderful things that are happening also and I pick something positive out of each medical adventure..................I truly believe that I am becoming a better sibling, friend and stranger; looking at the world with eyes wide open.

Plus the fact that as I back-down on my prednisone my mental clarity is returning and for that I am truly grateful. I am able to think clearer than I have in more than 3 months.

Finally..................WE CAN HAVE EVERY MATERIAL THING IN THE WORLD, BUT WITHOUT OUR HEALTH, DOES IT MATTER?

I have always been functionally ill, but the last few months have humbled me beyond belief. With each thing I endure, it increases my compassion for others and for that I am grateful.

Love to you all, and what we share and how it strengthens us.

Judy :Heart: :Tip-Hat:

numbness always reminds me ...
 

Hi Judy,

Any numbness always reminds me of low B12. My feet can go numb so quickly. Usually it starts with my toes feeling stiff, and I can't bend them. In terms of my feet.

But stress can make my hands go numb very quickly and then it's hard to type or even use the mouse pad.

B12 usually helps quite quickly. Do you take it at all?

I'm sorry, I shouldn't really write "B12" because then people go out and buy things that say, "B12" on them. When really what's needed is the Methylcobalamin form. It works much faster and better.

I would get the 5mg ones, the 5mg lozenges. They are sublinguals. That means that even if you don't absorb B12 anymore through your disgestive system, you still get it from the lozenges because you put them under your tongue and it goes straight into your body that way. Pretty neat!

I would for sure try that.

And, if you aren't doing anything for a liver cleanse, I would look into the Milk Thistle. It's been doing great for me. :)

Thanks Karen,

I will try both the B12 and the milk thistle. The past few days my hand has gone for numb tingling to almost the feeling one gets when fingertips and toes thaw from exposure to the cold. It is more painful than annoying.
Boy, the appt can't get here fast enough for me.
I do see my family doc next Wednesday and then I will be able to let her know how much things have progressed with my hand and feet and we will go over the back x-rays.
Your advice does do land on deaf ears. I do sense the fact that you don't agree with the Klonipin, and I understand that. It is a harsh drug, but until they come up with something alternative, I won't go back to the pain.

hugs,
Judy

Wondering if I can add a heart on edit...
 

Hi Judy,
OMG, I know that "frostbite" type feeling well. So not fun.

I used to get it as a kid walking home from school in the Wisconsin cold. Not walking home so much as when I'd stand by the radiator by the front door and my hands would start to "thaw."

You will get significant improvement from methylcobalamin. Do get that kind of B12 because it works much faster and better. Some people who get the cyanacobalamin vitamin B12 pills don't notice enough difference to continue taking them.

It's not that I disagree with the pain medication you're taking... is that what Klonipin is? for pain? It's just that I know that even a lot of Ibuprofen can be hard on the liver. From experience I know that when there's huge pain it is not just excruciating, it's wearing. It just wears you down.

So I'm totally in favor of the pain killers.

But now, when I'm actually at the point where the Ibuprofen is causing me pain (I'm referring to the dental problems which the periodontist thinks were made worse by the Ibuprofen) I'm just determined to avoid Ibuprofen.

Last week I had a lot of pain and it was really testing my resolve. But I took a few of the serrapeptase. Have you tried that at all?

A family herbalist friend of mine suggested it several months ago and I was testing it out, but then I got quite sick again... I was left in the cold and dark waiting for my ADA taxi ride after taking my vote in, and that did me in.

The serrapeptase requires an empty stomach, so no eating for something like three hours before hand... and no eating for an hour after.

So when I was really sick I couldn't keep track. It sounds silly not to be able to keep track, but I have a bit of brain damage.

Last week when I had a horrid toothache from infection which got worse with stress, I took a serrapeptase before going to sleep, and another when the pain woke me about 4 a.m.

I would say it got rid of about half the pain. It really dulled it. Oh, and it also seemed to work against this piercing pain I was getting in my thoracic diaphragm.

But it might not be all right with your other medicines.

I put the email my friend sent me on my web site, and I put some of the research about serrapeptase there so people could read it.
http://health-boundaries-bite.com/Serrapeptase.html


I failed to follow through on my "study" to see if it reduced varicose veins for me the way it was said to be able to...

I'm really glad you're going to try the B12 and Milk Thistle. Look for the methylcobalamin kind of B12. There's some research that says that kind can regrow nerves. I love that, REGROW nerves.

And when you start the milk thistle start off slow with maybe one capsule a day. It releases toxins that have been trapped in the liver, and that can be a bit of a jolt. I really thought I was having my mind turn to cement, which is how it was quite a long time ago when I'd been living in hydrogen sulfide. But that went away in about three or four days.

:)

Hi Karen,
Klonipin is not a pain med. It is in the family of bensodiazepine, which is used at times for seizure disorders, Parkinson's or as a anti-anxiety drug.
It works on the central nervous system and they have been using it to treat restless leg for a while now. Still, requip is the only one so far that is FDA approved.
I take it at bedtime, so all I know is that I can sleep pain free, so that is a good thing and also that one would have to back down quite slowly. My body is quite used to it so therefore I am sure that I would have some sort of redrawals if I just up and quit taking it.
So far in there research, something is misfiring in the brain and sending the wrong signal to the legs. That is pretty much how my sleep doc explained it.
Thanks again for your input,
Judy

Remembering Christmas 1997
 

OH, Sorry I completely misunderstood.

Do I understand now: You have a lot of leg pain? and the "creepy crawly" thing that they mention in the Requip commercials?

What really strikes me as I read what you've written is the leg pain... only I'm not sure I'm reading that right.

Here's the thing, in and around 1997 I was having such horrible leg bone pain at night that I was getting less than three hours sleep, even counting what I could catch during the day.

I was sure it was from stress... the IRS had levied me out of business collecting a year I'd already paid, and I could not get them to correct their work. U.S. News & World Report used some of my experience in a news story on abuse by the IRS.

Okay, so I thought it was the stress. And I always thought there were spiders crawling on my legs. I was constantly batting them off, but when I looked before I batted, no spider.

Then I was going to kill myself in protest of abuse by IRS and I flipped a coin to see if it was a good idea, (not wanting to go to hell) and the coins said yes.

OOPS! I mean, I was surprised.

But, I kept my word, as I'd been writing letters saying that if as a result of the IRS abuse my home was foreclosed or I ran out of money I would kill myself in protest.

However, I was found in my car and taken to hospital and saved. And in the tests they run on people who try to kill themselves there was a B12 test. My level was reported as "Profound Anemia." That was in May, 1997.

But then the police came to the hospital and took me to jail because the weeds in my front yard were too tall.... Chamisa is a local shrub that grows quite large.

So no one ever told me much about what "profound anemia" meant. I tried to sue the police for taking me out of hospital, and I was able to get my hospital records that way. (The police settled for $12,500 -- actually, it was the city that settled, as I don't think you can sue the police exactly. I forget. Sorry.)

Okay, so I knew my B12 level was low and that was why I was said to have "profound anemia."

And they'd given me a shot in hospital.

To continue having shots was $22 a shot and I didn't have any money due to having been put out of business. So I thought, well, I'll just get the MegaB vitamins from K Mart and take those. They said they had some B12 in them.

So I took two or three bottles in one month. I was taking two or three every hour with a lot of tea and other liquid.

And, to my huge surprise I stopped having any allergies.

But, when I had a second B12 test, my level was unchanged.

I had a couple more of the expensive shots, and then on Christmas Eve 1997 a new doctor that I went to prescribed B12 shots that I would give myself, so after that I had them regularly, and in fact the neurologist I went to after I was well enough to go back to work (not as a Realtor, I wasn't that well, but as a front desk clerk) said to take extra B12 shots when I was under stress.

So, some months later the pain in my legs was gone and I was feeling the spiders much less frequently.

to me, it was a miracle.

But at the same time, I was pretty upset that the original doctors had failed to tell me clearly about B12.


I mention all of that because maybe it will ring a bell with you. I hope you get the Methylcobalamin. I am so sure it will help.

Karen,
I truly believe that stress is the cause of many illnesses, especially in this fast-paced world we live in. I know for a fact that some of my ails are stress related. Money is a big issue for the majority of the population these days. I think there is just the rich and poor................no more middle class America anymore.

The commercials for restless leg are almost comical. Unless you have it, there is no putting it into the right words. Sometimes it feels as if there is a tight vise just below the knee area and it is slowly being slid down my calf to my ankle. If you try not to move your legs or shake them, you're entire body will tremble so it is impossible not to shake them.
I think it is a bit different for everyone depending on the severity. Mine is severe and only gets worse with age.

The deep bone pain you mentioned is definitely there and at times it feels as if the bones are being crushed.
So there are different levels,and years ago I had the creepy-crawly sensation, now it is just down-right painful.

You are so kind to send advice my way. I haven't been out of the house for a few days but I will get the things you mentioned when I feel better.

HAVE A WONDERFUL HOLIDAY SEASON AND TAKE GOOD CARE OF YOU.

You sound like you have had some very trying times and it also sounds like you are a very strong woman. :)
Judy

You know, Judy, that's it in a nutshell.

Medicine is expensive, and seeing a doctor is expensive. Sometimes it just takes so much that it sends people into bankruptcy or foreclosure, or maybe people just eat the cheapest food so they can by the expensive medicine.

I've more than once had doctors prescribe things that were 60 or more dollars when there was a perfectly good thing available for under $5.

When I first got tetanus the doctor prescribed an antibiotic that was way more than the money I had. When I called about it, the receptionist said that I could buy the medicine or not, it was up to me, but they weren't changing the prescription. :eek:

So a few days later when the lady came to help me, through traumatic brain injury, I asked her to call and explain to them what I had in the bank, and how it was not enough and I didn't have any other money.

That worked.

But I really don't think I'd be as sick as I am today if I'd known about how powerful vitamin C is, in the beginning. The Homeless doctor, whom I was able to see after my home was foreclosed, told me that a lot of my problems were from nerve damage from the tetanus.

So that's what makes me think that if I'd had proper treatment to kill the clostridia sooner, I'd be much healthier today.

I know what you mean... I am dreading having to go out next week. I have to go to the Appeals Court in the further attempt to get my condo back.

See, I know that if I didn't have the brain damage I would not have lost it.

Ooops, this train of thought tends to make me feel like crying and that does NO GOOD.

So, back to a more hopeful outlook.

Yes, get the Methylcobalamin.

Have you thought about ordering it from the web? I order a lot of things now.

If you do order it, take a look at the Jarrow Whey amino acids. I think they are helping my nerves heal in a stronger way. Also, they keep me from feeling starving and eating things that aren't healthy just to try to get rid of the feeling. (the vanilla is a bit... bitter tasting, I'm not so fond of it; but the chocolate and vanilla mixed are dynamite, with some cinnamon. MMMMM)

Barretts esophagus, can be a RED flag for celiac disease...which could explain several of your other issues, PLEASE check it out (gluten sensitivity forum here at neuro talk)

Judy
 

It sounds like what I have peripheral neuropathy, just a guess but you may want to have some nerve conductions tests to fid out. Its sometimes a long hard road to find a diagnosis. I wish you the best of luck.

Dana