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Old 06-24-2010, 08:30 AM #1
NordicGirl NordicGirl is offline
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Confused New, searching help

Hello,
First english is no my mother language, so forgive me mistakes and sorry, because this is a long story... And thanks for this forum! I ask these thinks allso in other forum, but I now need as much knowledke as possible...

Two yars ago I started have lower back problems and it was very hard to
rehabilitate, because some muscles were very weak and some were like steel. Meanwhile I started feel tiredness, heat and exercise intolerance, fatigue... Last summer they found hypothroidism and I started Thyroid (almost same as Armour Thyroid) and little bit later adrenal fatigue, but not severe (saliva test). I get medication to that too (hydrocortison) in december. My back have became better, I'm much more alive and have no more sinuitis...
BUT in January my right arm became suddenly weak (and it has been that way since) and I can't use it for example with typing or carrying hevier thinks. My last three fingers dont work at all and thumb and forefinger works sometimes and those are allso sometimes very strong that I can even carry not so heavy thinks. Left arm is pretty good and much more stronger.
In this year I have had more problems with my visual short therm memory so it's hard to remember thinks, because I learn most of things with my visual memory and before it have been easy to me remember and learn thinks. Usally it,s hard to find word, because I dont see pictures in my mind. Heat and tiredness are again very bad. Before I have had very good verbal output....
My heat and exercise intolerance have been much worse and if I walk about 1,5 kilometers or exercise little, next day I have to rest because my muscles are very weak and off course right away walking/exercising (both legs, right worse), but rest helps. And if it's a warm day, it's even worse. After that next day I might be so tired (physical fatigue) that I might have enought strenght to speake.
My room temperature must bee about 18 C or less, that I feel comfortable. My friends freezing when they are in my home and that has continued about two years... And forexample showering and cleaning are very bad to me.
Respiration is short and I can't breathe deep as I have done before.
Little swallowing difficulties. Food, vitamines stays easily in my throath and I need much water to handle with that. Raw food is hard to chew and my face muscles became weak.
About a month ago I had problems with my eyes. When it was fast movements for example during TV, all seems like I have looked old times films without voice

My hypothyroid treatment is in good balance and I'm stopping my hydrocortisone medication, because in that way it has done its work and my adrenal working well.
I have had EMG (not single fibre), CT, MRI, likvor (white cells little high 7), blood tests (no that achr or musk)-> no MS or that kind of disease (no lesions), no borrelia, CK value was fine. In EMG was marks of upper motor neuron problems in right arm and that arm was only they tested so they said that I can't have muscle diseases. No stroke. No nerve block....
I, my self know that I dont have mental problems, but that what neurologist no want do to me-> visit psychiatrist. I ask here about MG, but she said, that I dont have that kind of symptoms....Maybe she means ocular symptoms!? I was little bit stressed in that situation, because I didn't know about test results and with that visual memory problem I'm not so verbal and strong as usual :-( (two academic education, so...you know...
So.... I have started to find, what is happening to me, because doctor doesn't seem to do that. MG and that kind of disease seems to be quite near, but I'm wondering could long term (½ year) right arm weakness with three last fingers and problems with visual memory be part of MG symtoms?

If you dont think that it is maybe MG, what suggestion you have? I need all help, that you can give! I'm desperate :-(

I can't work because I work in customer service, so I have to have very good in verbal skills and need use very much computer (with to hands, because now I writing only with my left first finger (it's either ten fingers or just one finger)....

My neck muscles have became weak (started about 1 year ago) and it's wery hard to hold head up and my neck look like vultures neck... So my neck turns backwords and I have to work to hold it straight. This is changeing little, but my neck muscles are "permanenetly" in wrong position now. Chiropraktic has tried to help and I hade tried to do exercises witch I have had from my physiotherapeutist.
And one weird think is, that when I have done exercises (water gymnastic) my muscles are not painfull they became only weak.

What do you think of that (I get inspiration of eye ice test), I hold geleback from freezer on my very weak hand about 15 minutes and it started to work and it worked little while until temperature has raised again normal? Tells that it could be MG?

Can you here tell me, how long periods your muscle weakness takes? My other muscle weakness coming and going depending for weather and how much I have overburden those, but my right arm weakness stays all the time and thumbs and forefingers hold changeing (three others dont work). Weird...
Yesterday, when it was hot day and I walked little, after that it was so difficult to walk. Now room temperature has rised (over 18 C is too much to me nowdays) so even in the nights I can't recover to next days doings. Have you similar problems?

Sorry for this very long letter, but I wanted to be as exact it's possible, but feel free to ask mee more. Thanks!
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Old 06-24-2010, 11:59 AM #2
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I have had MG for two years now. I have had ptosis, double vision, trouble swallowing and chewing and got steadally weaker for more than a year with more and more fatiigue. I also had 1 crisis. My treatment of IGIV's, mestinon and cellcept seems to be working pretty good and this year has been much better. All of my muscle weekness has bilateral.

Some of you symtoms seem unusual to MG but I too have cramps in my feet and legs but my Neuro says thats not a MG symtom.

I wish I could be more help but you seem to be running from 1 doctor to another but you must find a Neuro that works with MG patients.

Good luck
Tony
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Old 06-24-2010, 12:47 PM #3
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Hi Nordic Girl .... welcome!

It does seem that some of your symptoms are consistent with MG - but some are not. There are a number of folks who take prednisone for MG and it does help them. So I would imagine that if you do have MG, the symptoms would have been helped by the hydrocortisone you were taking for your back.

Are you having increased weakness since you have decresed the hydrocortisone?

Has any one of your doctors tried Mestinon to see if you responded?

Is there another neuro that could perhaps bring a new perspective?

I am so sorry you are having such difficulty getting answers, but unfortunately, it is not unusual. Be persistent, get copies of all your tests, do your own research, and keep searching until you find a neuro that will work with you to your satisfaction.

Good Luck!
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Old 06-24-2010, 02:29 PM #4
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Thank you scrubbs and suev

Even if you can get sufficient answers, it helps to limit, what this could be. And many of you have quite long way before diagnosis and doctors must have suggest other diseases too. And here in internet is plenty of knowledge if I only have words/names to search. So that's why I'm looking for diseases rare too, witch mimics for example MG. Because doctors dont search/thinks I have to do that. Little dog trying to find bone

My work healthcare doc suggested one neuro and I'm going to visit there in two weeks. I'm going to ask her about Tensilon test (was that right?). But help from here helps when I go there.

Suev: You asked about hydrocortisone. My symptoms have ingreased when I have decreaset it. I have thinking it's possible that I have had little protection during that medication, but those dosages have been quite small compared to usual treatment to MG or another that kind treatments. It is possible it doing my symptoms weird and unusual compared to this kind of diseases In two week that medication is over, so it's intresting to see, what happens after that...

My adrenals have been little weak so they needed help to have enough cortisol convert thyroid hormones to cell level. I have decreased very slowly and s-korsol have been tested cople of weeks ago and adrenals worked fine.

Thanks to you!
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Old 06-25-2010, 09:01 AM #5
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Nordic Girl, I would definitely keep looking into MG as a possibility. In the meantime, look into getting tested for Celiac Disease as well - it's a very simple blood test. Even if the test comes back negative, you may want to try a gluten-free diet for a month to see if it helps even a little bit. Get tested FIRST, though!

The best website to check out is www.celiac.com - you can find links there to support groups all across the world. Where are you located? I know that European doctors are much more aware about the high incidence of Celiac Disease and gluten-related issues than American doctors are right now (they're getting there!).

I don't want to clutter up this page with too much information, so feel free to PM me or check out some of my other posts (I'm fairly new to MG, but I was diagnosed with CD 2 years ago). The fact that you have hypothyroidism and adrenal issues, and now a possible MG diagnosis, makes it much more likely that you may have undiagnosed CD. In many cases, following a gluten-free diet can relieve a LOT of your other problems, or lessen their effect.

You should be able to get GF food at most grocery stores, and many restaurants have dedicated GF menus. There aren't any special supplements that you need to take, although you may want to have your vitamin levels checked - many people with gluten issues have lowered levels of D3 and some B vitamins (which usually resolve within a couple of years of following a GF diet).

I hope this helps!
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Old 06-25-2010, 11:10 AM #6
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Nordic Girl,

From your description, it sounds very likely that you have MG. I hope that you get tested for antibodies. Maybe, if other diagnosis have been ruled out, your neuro will let you try taking Mestinon to see if it helps. I have had MG for a little over one year and am so thankful for the Mestinon.

I had the same finger weakness you described and my memory has suffered, especially my ability to remember words. I, too, am very educated and usually very good at communication, but find it difficult now that I have a hard time remembering the words I want to say...frustrating.

These symptoms are difficult to live with, I hope you get help soon.
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Old 06-25-2010, 12:40 PM #7
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Hi teresakoch and thanks for your advice :-)

I'm living in Northern Europe and CD is well known, but not clutein sensitivity exept people who are intresting different kind of diet thinks. I have read that "Dangerous grain" or something like that in english...

I dont know if I have CD, but I have eaten CF over a half year now. And it has feld good and now I dont want to start again only for to be tested. I have been also lacto-ovo-vegetarian, but I started to eat meat and fish again, because soy was too prescriptive in my diet and soy is not so good to hypothyroid people. So that was easier solution. I eat generally organic food and I do most of my coarses home from beginning. I have done that many years. I also bake CF bread home. No kids, more time And a my way of living.
My D3 level tested and it was ok, but I still eat 125 micrograms daily because I cant be in sunshine (heat). My B12 was ok too and I take multi B-vit. tablet daily and extra folic acid. Also omega-3 capsules, because I dont like fish so much. I forgot to tell those things in my first post, sorry...

Thank you so much to helping me trying to find my "bone". I noticed that in this forum you have great knowledge and it's not easy to try find things alone.
When you have searched your diagnose, what other diagnoses docs, you or others have suggest you might have?

Oh, DesertFlower (nice nic). I wrote all that previous and then I noticed that you have answered too. It,s so nice to hear someone else has had those kind of symtoms like mind. It helps a lot It's a frightenig situation when it starts to notice became more "stupid" and have no idea what's happening... Thanks for dealing this with me.
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Old 06-26-2010, 10:33 AM #8
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NordicGirl,
The MG diagnosis was found quite by accident - I thought I was going to be getting some cheap plastic surgery on my eyelids (indications were that I might just have "hooding", caused by age and gravity). Unfortunately, I "failed" the icepack test. In my case, the MG was caught VERY early, so I am quite fortunate. I don't know how it will progress from here; I am hoping it won't get too bad.

I did have some of the other symptoms that are seen in people with MG, but they were so subtle that I attributed them to getting older, my weight, and/or generally being out of shape. I told my husband that now I have a doctor's note to be fat and lazy!
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Old 06-29-2010, 07:40 AM #9
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Thanks teresakoch It's very helpful here others experiences.

I have noticed somethink intresting. I took Triptyl (amitriptyl) 10 mg to nights (started january) to help my back getting better and improve my sleep (it hasn't been enough deep). I noticed, I have to take it very early to wake up frech. Because I have had problems, witch I told you, I didn't notice it can be medicin doing symptoms to me and it's lowest dose in that medicin.

It was intuition I stop that medicationand try what happens. After 1,5 week I stopped taking Triptyl, my worst cognitive problems has disappeared. I still have problems with short term visual memory so I can't learn during that witch is most natural to me.

I found this from here , sorry I can't attach link, I'm too new
"Amitriptyline blocks a certain type of receptor for the neurotransmitter (see glossary), acetylcholine, and, consequently, may interfere with the functioning of this neurotransmitter on various organs. The transmitter, acetylcholine, which is normally released from nerve endings, cannot activate receptors that are blocked, resulting in symptoms. "

So, what I'm thinking is, could it be (if I have MG) I had problems even with so small dose? I'm not sure, if I understand right MG mechanism, so if I'm wrong so please explain to me. I have understand MGer have problems with asethylcholine and its receptors specially with those functioning to muscles.

I'm going to have (hopefully very good) neurologist visit in two weeks. I try to have tests to analyse if I have MG. It has been so difficult times, because here is quite warm. Can walk 1,5 km and then I'm finnished Two years ago I enjoyed sunshine and warm...
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Old 06-30-2010, 09:43 AM #10
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If you have MG, you want to avoid ANYTHING that blocks acetylcholine from being transmitted. I would find something else to help with your pain - talk to your doctor to see if there is something else that you can take until you have a chance to see your neurologist.

You'll want to stay out of the heat and avoid too much strenuous exercise. If anyone gives you any grief, just ignore them - you know best what works for you, and nobody knows better than you how you are feeling. Give yourself permission to take it easy in order to conserve as much energy as possible.
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