Thread: End of the road
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Old 12-18-2012, 09:20 AM
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Join Date: Oct 2012
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10 yr Member
wild_cat wild_cat is offline
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Join Date: Oct 2012
Posts: 84
10 yr Member
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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