I don't know what to do.
September 4, 2015 at 4:56 pm
This is a very long story but it started with the worst and strangest illness I have ever experienced. Last October now I came down with a terrible stomach bug, and then just a little bit later something that felt like mengingitis even though people kept convincing me it wasn’t. I had what seemed like botulism — my head and face were very tired, I was dizzy, had a bad stomach, and then one day jogging across a busy street I somehow burst a disc in my neck and two in my back.
Then something else started happening — I got Lhermitte’s sign when I tilted my head down. I would feel these little “bites” on my back and neck as like the neuromuscular junctions were popping off of my muscles. My face was not working right and I don’t think my pupils matched. I went to the ER three times and every time they sent me away with a referral, like I would have any idea how to use it at that point. I finally made an appointment with a rheumatologist, a neurologist, a near-opthalmologist, a gp — I got conduction studies that showed ” mild subacute-chronic radiculopathy at L4 in my right leg. That’s it, that was all they found.
While all this was happening, I was experiencing a whole boatload of terrifying symptoms. Whenever I laid down at night it would feel like I was lying on top of a motor. My left hand stopped working for a while. I’d have the strangest feeling that my nerves were not very well attached to my limbs because whenever I moved they would seem to jangle inside my skin. I can’t sit up for longer than a couple minutes because I start to shake, which also happens when Im lying down and tired or just randomly.
I had what I think was some kind of “exacerbation” in March. I had constant diarrhea and then I swear I could *feel* the nerves in legs take up the same problem that had only been in my arms and my neck. I had floaters, blurred vision, whole body tremors, weird convulsions at night and more shaking, vibrating, the tuning fork feeling. I’ll roll over on my back and it will feel like my whole sacral area is coming loose and jangling around. I have constant vibrations all the way down my spine. When I sit up I can feel my whole back flickering and my head feels like it’s bobbling off my neck, or I am on a boat ride. I have an eyelid twitch, and sometimes the front and sides of my neck will start to fasciculate like crazy. These things all come and go all day and all night long.
The neurologist saw that my left leg trembled when I tried to stand on it and said I had a “exaggerated physiological tremor” and sent me off to get assessed by an endocrinologist, who made me wait six weeks to tell me my thyroid “was not symptomatic”. I have a positive ANA, a positive SSB but the rheumatologist said I did not have Lupus or Sjogren’s.
Finally I was back in the neurologist’s office now in tears, still shaking like a leaf and feeling my nerves jangling around. She decided I might have myasthenia gravis and found “borderline” anti- acetylcholinesterase antibodies and then sent me for an SFEMG, which was negative; meaning I do *not* have myasthenia gravis.
Now I am just lying here, shaking, reading these stories and terrified I’m going to lose my ability to walk. I can’t think of what else it could be but either GBS or some variant of CIDP. I’ve been close to bedridden for eight months. The neurologist is on vacation till Tuesday, it’s been nearly a year and I am no closer to any relief or diagnosis or treatment. I haven’t worked since the beginning of 2014. Pints and pints of blood have left my arm and still nothing.
I have taken a million supplements, gone on an autoimmune diet, taken gut healing powder and IBS pills, bought neck braces and hip braces and special wedge pillows, and read and read and read the internet trying to fix myself somehow.
I am on the verge of taking a Medrol pack that I saved and never took from an ER visit in March without supervision. I am *desperate* for some kind of relief. I just absolutely do not know what to do anymore. If anyone has any advice, I’m out of both hope and patience.
September 4, 2015 at 7:24 pm
Have you read through the following publications:
After reading the publications and you believe you may have CIDP/MFS or one of the variants, you should seek a neurologist who specializes in these diseases.
What specific type of nerve test did they perform (EMG, NCV, NCS)? Did they do a spinal tap and CSF test? Have you been treated with IVIg/SCIg or Plasma Exchange? What city do you live in? Are you near a Center of Excellence? Maybe we can help steer you to a good specialist in your area.
September 4, 2015 at 8:57 pm
Thanks for the links. The first one — the Miller Fisher variant one — this is exactly what happened to me. Cranial nerve involvement, bulbar weakness that progressed to my left arm and hand. Then later, during a second bout with severe stomach problems the entire thing descended. I could actually feel my nerves getting attacked until my knees were wobbly and suddenly I had to sort of massage the ground with my toes to stay stable. There were issues on both sides but the left was the worst.
How could I have missed this? I’ve been in bed for seven months just waiting for *something*. The whole time I kept reading about all this I kept thinking well, it can’t be GBS or anything like that because I have descending weakness, not ascending weakness. I think I just skipped over the “Miller Fisher variant” part. GBS meant total paralysis and I didn’t have that. I searched, I vetted, I shook my head. Nah.
What the hell, I’m not a neurologist, that’s why I spent my life savings going to see these people. I would have been MUCH better off just buying prednisone and treating myself, that is if in fact I even have a neuromuscular disease that’s treatable, NOT THAT ANYONE HAS TRIED TO FIGURE THAT OUT THIS YEAR.
I’ve been going to see a neurologist at Northshore University Health System. I’m so angry right now because I kept telling this story — about the facial weakness and the “viral prodrome”, diarrhea, descending weakness –all the things that happened — and the first thing she sent me to do was go visit an endocrinologist who not only made me wait six weeks to see her but then sent me for blood tests for a pheochromocytoma, which had to be sent off to Mayo, which took another week, and then when I made another appointment I got sent away again *because the endo had not contacted me in person yet.* I kept telling the story because I thought it might be important, because for example the *neurologist* whose photo is published on the Neuro clinic’s website is ten inches across from a hyperlink that says WE TREAT CIDP!
Goddammit I am so upset.
September 4, 2015 at 9:55 pm
Did you have the tests that Jim-LA mentioned? These are essential to diagnosing peripheral neuropathy. Unfortunately, you seem to have a case which is not easily diagnosed. I’m sure it is frustrating, but neuropathies are difficult to diagnose when the presentation does not conform to the typical symptoms of the more common disorders. It seems to me that you need to get to a place that can resolve the diagnosis.
Self-treatment based on your own ideas about what you need is not likely to be helpful and could be harmful. I would concentrate my efforts on getting referred to a clinic that can diagnose a complicated case.
September 4, 2015 at 10:51 pm
Thanks, you pretty much said the very best thing possible, so thank you. Even about the self-diagnosis, which is true even for people who have been in bed by themselves for a year.
So –I had the full monty. I had an emg, an ncs and I don’t know what an ncv is but I had sfemg and repstim.
Out of all of those approaches, by two doctors, the “abnormal” part reported was ” Voluntary contraction of the tibialis anterior and vastus lateralis elicited mildly polyphasic and complex motor unit potentials.” Going on to say that the conclusion drawn from that abnormality was “mild, subacute-chronic radiculopathy at L4 on the right.”
I believe every other Possible Thing was normal, although it was consistently only my right side that was tested because they were looking for only systemic abnormalities. SFEMG test of the neuromuscular junction via the right thingy thingy ( actually it was the nerve that connect to my middle finger and my wrist) on the right were righteously normal.
I don’t know. I AM OBVIOUSLY DOING SOMETHING WRONG. I don’t know what it is but that wrong thing seems key, because despite all my Normal Tests my actual reality is HUGELY ABNORMAL. I pay my insurance out of my savings, I go see these crisp educated oblivious humans, they blow me off and collect more money, I shake and worry and Google my own personal atrocities from my bed because I have my karma just like everybody else and that is fine but for God’s sake there has to be some way to communicate to the Sickness System that I happen to be sick.
September 4, 2015 at 11:26 pm
So you reside in the Chicago area? The nearest Center of Excellence is the Mayo in Rochester, MN – about 5-6 hours drive from you. You can make an appointment at their neurology department here: 507-284-1588. Tell them you were referred by the Foundation and you are seeking an expert who can diagnose and treat MFS/CIDP.
Another option would be to contact the GBS-CIDP Foundation liaison in Chicago and seek references to knowledgeable specialists near you:
They will likely repeat some of the tests you have had, but their analysis will be more experienced based so they can help you better.
I have MFS and thought some of your symptoms could be related to MFS, especially when the face and eyes are involved. My onset was atypical too, the numbness spread from my belly (where it all started for me) down and up.
I hope you get the treatment you need right away.
September 5, 2015 at 12:04 pm
I’ve briefly read over what you’ve said and the advice you have been given.
It took me a long time to get an accurate diagnosis. Luckily, my case is not as severe sounding as yours. Hang in there.
Telling you that you have “Radiculopathy” is a cop-out from someone who does not understand how to interpret EMG/NCV for symptoms of CIDP or other peripheral neuropathy. It takes a specialist to test and interpret the nerve conduction times and waveforms and these must be taken from specific locations.
It is vital, imperative (pick another adjective) that you do as Jim-LA and GH have advised. I will ‘throw’ out some advice.
1. Forget what you’ve been told in the past. Only today and your future matter now.
2. Forget what tests you’ve already had. Doesn’t matter. Every Specialist will test you again.
3. Get to a neuromuscular specialist or neurologist specializing in GBS or CIDP.
I agree with Jim, go to Mayo in Rochester. Or, try Northwestern University in Chicago. Be prepared, have all your test results in hand so you can copy and send them to the places you choose to apply. Do it now. All of these specialty centers will likely have waiting lists.
Some neurologists specialize in nothing. Some specialize in other areas and will certainly ‘pretend’ to have knowledge about your condition. Move positively and bravely forward. Remember to smile and laugh everyday. The alternative is unbearable.
I’ll say it again- Do not settle for being told you have radiculopathy. Unless they all tell you that. In my case, ‘all’ meant at least 20 doctors until I finally went to Mayo Clinic Rochester and the old grey haired specialists Doctors agreed to see me and test me.
Take charge of yourself and your case. Be your own general. Go on a mission to seek out doctors who will listen to you, and then, who will help you.
September 5, 2015 at 6:20 pm
Thanks for your advice. I checked and I can’t go mayo because my insurance doesn’t take it. Not sure about Northwestern.
I’m so worn out by this at this point. I feel like I’m stuck here.
September 6, 2015 at 9:42 pm
OK, good. Good that you checked on going to Mayo clinic. The limiting factor you report is your insurance. Turn the horse and cart around. Find out where you can go and be covered by your insurance.
This gives you a positive thing you can do.
GH already said it. I’ll tell you again. Quit doing this- “Google my own personal atrocities”
Did you call the Chicago area GBS-CIDP Foundation liaison as Jim suggested?
September 7, 2015 at 9:30 pm
I feel so sad for you…untill you find the doctor who is going to have that aha moment, as I think I know what’s wrong with you. But they are far and few between. Try to find a neuromuscular specialist. I waited 5 months for one. But my neurologist could not diagnose me. Neither could anyone else.
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