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End of the road

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Old 12-18-2012, 08:20 AM   #1
wild_cat
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Default End of the road

I want to first apologise for posting this here as it seems many of my (new) symptoms are not MG related. However, I have no idea where else to post it. I also have to apologise for the length of this post, there is a lot going on and I want to give the full picture.

I had my respiratory testing, EMG and first meeting with an MG neurologist yesterday.

My respiratory tests came first. I found I got very out of breath and at times faint just breathing into the tube. The nurse had to give me three or four minutes between each one as I became so out of breath. I found it incredibly difficult to breathe out with any force as she was asking me to do. I do not yet have the results of these test.

I then went for my EMG. The first thing the Dr said when I went in was 'so I hear you have convinced yourself you have MG'. I said that I really wasn't sure what was going on, especially in light of my new symptoms. He tested first with the electric things and then needles. Each electricity zap caused the targeted limb to jerk uncontrollably. At times these jerks went into the rest of my body. He had to hold the limbs down to get the results. With the needle he was asking me to create muscle resistance of my fingers and then bicep muscle. I was barely able to get my fingers to do any resistance at all. He kept repeatedly putting my fingers into position and telling me to hold them there. I was telling him I was trying my best but he seemed to get quite frustrated with me. My bicep muscle was much better. He tells me that my EMG has yielded completely normal results.

I then went to the neurologist. My father came in with me. I gave the neurologist a short list of my symptoms, pre-existing conditions, and tests, all on 1 A4 side. He asked me why I was there and what questions I had for him. I explained that in light of my new symptoms (difficulty swallowing, chewing and breathing in the last ten weeks, and muscle hyperactivity and limb jerking in the last five days) I wondered if it shed any new light on the last three years of chronic muscle weakness. He said no. His feeling was my symptoms are what they call functional neural deficit. This is when the nervous system has no permanent damage but there is a software problem, similar to when a computer crashes. I asked him if he could perform a test for this and he said no. I asked why it was that the previous neurologist I had seen had told me the same thing and then sent me an invitation to be an impatient in a psychiatric ward. He explained that he thinks my symptoms have an emotional origin. He then said the appointment was only half an hour and it needed to end now. He went outside and came back and said he could give me another half an hour. I asked if was going to examine me. He said there was no point, but if I wanted him to then he would. He began by testing my reflexes. This caused me to have huge muscle jerking in the limb he stimulated. After this happened three times he said he couldn't examine me and went and sat back down. I asked where these jerks were coming from. He said they were from the voluntary muscles and partially 'self-directed'. He said it is a form of panic attack. He said that my breathing symptoms are from hyperventilation. I said I would describe myself as under-breathing, not over-breathing, and he said this can be a form of panic attack too and is part of the functional symptoms. I asked him if he could tell me why my symptoms are not MG. He said you don't get muscle jerking with MG (I know this, and feared these new symptoms would illicit this response). He said you've had the acetycholine test and that's negative – this means you don't have MG. He said MG could only explain 10% of my symptoms, and that he is convinced, as were the other two neurologists, that it is functional.

He offered (and I have accepted) a referral to be an inpatient in the New Year in a neurology ward. However, he was very careful to insist that he will not do any more tests. He will only offer therapy during this time, primarily to identify the 'emotional' problem. I asked what happens if they don't find an emotional problem. He said they always do. I said the only emotional problem I have is people telling me my illness is caused by an emotional problem. Therein, the appointment ended.

I feel this is the end of a diagnostic road for me now. I saw my GP last week with muscle hyperactivity which they were then able to induce using BP monitor inflation on my arm. This happened to me a further 2 times following being taken to hospital by ambulance on Saturday. This jerking starts in my arm and goes into my body. I had a seizure (my first) on Friday night, which was precipitated by an extreme and sudden change in mood, irritable for no reason, and then sudden uncontrollable crying with no reason for it. This is completely unlike me and I never behave like this. At the point I was able to stop crying my body convulsed and moved me (according to my father who witnessed it) 6-7 feet across the floor. I have no recollection of the event.

I thought that these muscle jerking symptoms were an allergic reaction. At first I thought they would go away overnight. However, it seems they are still here. Since they started last Wednesday I have significantly changed my diet to prevent it happening again. Following Friday's incident, which happened half an hour after eating, I have only had organic peppermint tea, dry brown toast, porridge, boiled or baked potato and fish. I have tried going without eating. What happens is this: As I go without eating I become very unresponsive, I have the most excruciating headache, and a horrible taste in the back of my mouth. Eating itself is difficult as it makes me feels sick. Chewing becomes slow and yesterday I inhaled a piece of bread. Liquids are trying to come out of my nose when I swallow. After eating within half an hour I feel stronger, the headache and bad taste disappear and this lasts for about three or four hours, when I then start to get the muscle jerkiness. That lasts several hours. Then I get massive diarrhea and I'm back to square one with the headache and bad taste. Due to this cycle I have lost 4kg in little over five days and am now underweight.

I try to think of any pattern. Only thing I can come up with of recent is that for three months I had no menstruation. Then last month when it finally came the very same time I have very bad difficulty breathing and was taken to hospital. This month my period came almost exactly the time the muscle hyperactivity and mood changes started on Wednesday. I don't usually get like that at all, so it isn't usual.

I can't think straight or concentrate to do my normal work. My muscles are very weak, except when they're going berserk. I guess I have to accept that this is how I will be now. I know Drs have to find a point where they stop testing, and I've had a lot of tests. I don't want to live my life like this indefinitely, but it seems I have no choice.
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Old 12-18-2012, 10:21 AM   #2
Anacrusis
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I can´t quite see you going from this:
Quote:
Originally Posted by wild_cat View Post
Before I became ill I was traveling Europe attending conferences, giving lecture recitals and performances of original dance works. I went hill walking every weekend and had an active social life. I played piano three hours a day and regularly gave concerts. I was very independent.
to being a person with some sort of emotional deficit just because you have incongruent physical symptoms that a physician can´t quite put his finger on......

Yes it´s a long post but to be honest I don´t think I would have been able to write a coherent long story like this if all of that had just happened to me.

You can count on my support any time wild_cat
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Old 12-18-2012, 01:21 PM   #3
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BTW.....Yours may not be the one below but there ARE other conditions than just psychosomatic ones that exist which include both muscle weakness AND spasms/seizures - but those would take someone with perhaps a little more experience than described for accurate diagnoses???:

http://mda.org/disease/mitochondrial...thies/overview
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Old 12-18-2012, 03:20 PM   #4
alice md
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The vast majority of the known diseases-those which have a known clinical course and diagnostic tests, were described by physician who lived 100 years and more ago.

Our environment has changed tremendously since then, but we still stick with those old descriptions and what doesn't fit or is "unexplained" is thrown into the rapidly growing basket of "emotional problems".

"Functional", "low threshold" and many other terms are being used to describe those entities. They all replace the true term which is- "we don't have a clue, and have no intention of bothering to try and understand what doesn't appear in our books" . Physicians are seeing more and more patients with obscure/vague symptoms. We are also seeing more and more disease of the elderly at a much younger age. I personally think that this is the sad result of the enormous and cumulative amounts of toxic substances we ingest, inhale and absorb through our skin in a world which is becoming more and more synthetic and further away from what our body should have been exposed to.

A colleague recently told me about a mouse in which there is a mutation in one protein, which is involved in DNA repair. This mouse has normal strength but develops fatigue rapidly. It is still not clear what is the exact mechanism by which this happens, but there are apparently some metabolic changes.

I was quite fascinated by the way in which a seemingly unrelated protein could cause a myasthenic like weakness. At the same time I told him that there is no doubt in my mind that if a person with a similar mutation was seen by a neurologist he would have been diagnosed as suffering from "emotional problems".

One protein which is altered can lead to significant and remote changes. Such alterations can be from birth or as a result of modifications by various substances or immune processes. many times it is a combination of genetic propensity with environmental exposure.

But, such alterations may be reversible.

Dietary and environmental changes will not lead to improvement within a few days. It can take weeks to months or possibly even years. But, I personally believe that this is what you need to do and not "search" for some obscure emotional problems.

You may (or may not) find this helpful:

http://www.youtube.com/watch?v=KLjgBLwH3Wc
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Old 12-18-2012, 08:35 PM   #5
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Wild_Cat, First, I am so sorry that your symptoms are being chalked up to a psychiatric disorder. Do you honestly believe that is the case?

I have no idea where you live but it sounds like it's hard to get to a doctor. People often have to travel to places like the Cleveland Clinic or Johns Hopkins to get more specialized diagnosing. Whatever you do, don't tell your docs you think you know what's wrong! They hate that.

There are so many different kind of diseases that could cause your symptoms. For a doctor to "give up" says more about the doctor than you or what's going on.

I have no idea what is causing your muscles to jerk. You would think the pressure on the nerves/muscles/circulation after the BP cuff would give the docs a clue!

There are channelopathies that can cause a variety of problems. There's neuromyotonia. LOTS of other diseases.

http://www.neurologyindia.com/articl...ast=Panagariya

http://www.ninds.nih.gov/disorders/i...s_syndrome.htm

You said that you had diarrhea. How long has this gone on? Is it after eating? What if you have celiac disease? Can your primary doctor test for that?

Did you get a copy of your breathing tests? If not, GET A COPY!!! If you had such a hard time with them, how can they be normal? Did they even think to do an arterial blood gas? Check your oxygen saturation?!

Do you have a good primary doctor? I think it's time for a heart to heart with some doctor. Tell them that you don't know what is going on but you don't think it's psychological. Ask them to help you!

Please do not give up. You deserve to know what is going on with your health. It makes me very sad that no one is willing to go the extra mile these days to figure things out.

I'm so very sorry you are going through all of this. Angry too. Simply because they haven't found something yet doesn't mean there isn't anything to find. Hang in there!

Annie
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Old 12-18-2012, 08:39 PM   #6
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gosh, that just sounds AWFUL.. I am so sorry you are having to go through, not only feeling awful, but having to experience such insensitivity and them telling you it's in your head...
I got a lot of that "aww your a new mom of 2 young kids, working a full time job".. that can cause a lot of anxiety. ... etc etc... My response was "I hope that this is all in my mind.. as honestly, that would be the best case scenario right? ?? Just put me on some pills, get me some therapy and call it a day".. (I know it's not always that simple of course, however... ).. they didn't know what to say in response to that ,,,,,,

they have likely never walked in similar shoes.. therefore can't understand not only the mind games that we play on ourselves, especially without a firm diagnosis.... or just the stress that every single motion, every single minute of not feeling "normal" anymore can do to you .. physically and mentally.. OF COURSE when you have a physical ailment that interferes with every aspect of your life your gonna be anxious.. i'd worry about anyone who wasn't!! And of course there will also be an aspect of depression... HOWEVER... it's so important for your provider to understand which came first - chicken or the egg... I had a neuro tell me, yes I'm weak, but she thought anxiety was a big part.. however my PFT''s were pretty darn low, and they admitted me into the hospital (exactly one year ago).. I got IVIG and am now a new person, though still not "normal".. I still thinks he thinks anxiety is a big part of it.. but of course i'm anxious.. but it is not the cause of my symptoms!!!

I would say seek a dr that will take you seriously.. though it sounds like with them planning an admit for treatment, they are at least taking you a little seroius?? I feel like my dr's have gotten to the point where we are no longer really testing (besides follow up/repeat tests).. and just say "uh, it's some autoimmune thing with your nerves and muscles, we will likely never know".. I would love to find a concrete- treatable answer, but i'll gladly take just the treatable part too!

Keep us updated, oh I meant to say - have you researched neuromyotonia, or myotonia? the jerking/spasms sound like myotonic "attacks" or something.. if you tap your thumb pad does your thumb go all wacky?? (mine did before IVIG).. that is myotonia from what I know..
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Old 12-19-2012, 04:22 AM   #7
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Thank you very much for all your responses.

Alice, this link has been very helpful, thank you. I am going to try this paleolithic diet. I will cut out all grains (oats, rice, wheat and corn products), dairy and sugar, including fruit, which seems to be a big culprit in setting off the muscle hyperactivity. Can you advise me of how I can replace the carbohydrate component of my diet? I really want to try not lose any more weight. I have a great book here called The Food Doctor but it doesn't talk about meats or fish in there. Are there any fish or meat I should avoid?

Annie, I absolutely do not believe my condition is a due to a psychiatric issue. I do live in a remote place with limited access to medical help. I need a referral from my GP to be able to see any specialist or visit any clinic. He does not believe my symptoms are psychiatric but says we've done all the tests and there's nothing more they can do. It was him that suspected MG and made the neuro referral, I never suggested to anyone that's what I thought I had, that's what was suggested to me. I have had the diarrhea for six days now. It does seem to come on after eating. I've never been so intolerant to things before, quite the opposite. They didn't do an arterial blood gas but they did check my oxygen saturation, which was normal. I will get the result of this test and the EMG report via the neuro once he has looked at it. I saw my GP last week when all this first started and he said it's up for the neuro to decide, help and test as necessary. I'm not sure how far I would get to go and see him again...

I'm sorry your had this experience too, Bny. I felt so ill the last week the only way I could reassure myself was to tell myself it was my imagination, even though I don't believe that. I'm very frightened I'm going down hill, down down down. My eyes took ten minutes to focus (un-blur) when I got up this morning. I don't enjoy not being able to see well like this. I completely agree about the chicken-egg scenario – why don't they ever ask? Yesterday I ate a banana, and within half an hour I suddenly felt extremely angry, at the brink of despair and then elated all in the space of 45 minutes. My muscles became so hyperactive I felt I had super-human strength and that I could tear up the house with one hand. Then after an hour and a half or so I go back to not being able to even walk across the room and being very weak again. It's very confusing and distressing. It's not my feeling a certain way and then getting the symptoms. It's just I'm not in control of it at all and it's not normal!!! The suddeness of these emotional changes, particularly because they happen in a room on my own, with no external trigger, while I'm minding my own business trying to write an article, make me certain it's not due to anxiety. Well, I'm glad they will admit me, but as they won't even repeat any tests, let alone do new ones, I'm not sure I see what the point is or even why they offered to do it, other than to get me to stop asking awkward questions and leave the office...

I'm staying off researching anything now. I have no clue or way of telling what's wrong with me. I have no experience and no qualification to lead me to a diagnosis. I just have to work at the base level and experiment with things and see what I can find to work.
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