Question about my DR’s Visit

Hi Sue, One of the main things to look for in MG is in repetitive motions. Do you have problems doing the same motion more than 4 times in a row, to the point of noticing a fault in the last motion as compared to the first motion? Its the repetitive motion that changes, can cause alot of pain to develope after repeating the same motion, weaker repetitions, unlike just a tired or worn out feeling after all motion is stopped. There is also a higher fatigueability with movements. If they are going to do testing on you ask for both blood tests to be performed, the one alone might not show what the other one can show, anti-musk testing is the second and the one that isn’t done too often because not many drs understand it. Write down your questions and those new/remembered symptoms, it will help you in the future. Take Care.

Hi Sue, I also had/have Dysarthria and Dysphagia due to the Miller Fisher variant of GBS and GBS, in the dictionary it states [B]Dysarthria[/B]: difficulty in speech articulation caused by a lack of muscle control resulting from damage to the central nervous system and [B]Dysphagia[/B]: difficulty in swallowing, with a variety of possible causes. I hope you are able to get back in touch with your doc so that you can get the necessary testings. Good Luck and Best Wishes!

Sue, dysarthria just means trouble speaking clearly (dys for not right and arthria is the act of speech. there are many possible reasons for dysarthria other than myastenia gravis. Myastenia is a muscle problem. GBS/CIDP is a problem with the nerves; muscles are often affected because motor nerves go to muscles. The nerves to the tongue or throat can be affected in GBS/CIDP. They typically are for the Miller-Fisher variant. Sensory nerves are also important in speech. I know I have felt like my lip and tongue are “asleep” and I talk funny to me when this happens.

I would make sure that you do tell him about the trouble walking since being a child. This can make you think of a hereditary condition since it has been present almost all your life. It may not mean anything either other than you tended to be a little more clumbsy than others on the scale of coordination, but it is worth him thinking about.

Lots of people have trouble seeing as they have more years go by. You should also tell him about dry eyes because this can go with a rheumatologic problem and some rheumatologic problems can also have neuropathy. the reason to know is the best treatment options might be a little different if something were hereditary or rheumatolgic.

I do not mean in any way to scare you. I do not understand why your neurologist wanted you to see another neurologist, but it is often a good idea just to rethink all the possibilities. This does not mean that you have then or have more than one something, but that sometimes with strange illnesses like CIDP that are so different in different people, someone new might have an “ah ha” moment and know better how to help.
WithHope for a cure for these diseases.

Hi Sue! I think everybody answered your questions so I just want to wish you well and hope you recieve a diagnoses soon! Isn’t a pain being sick with something and having no answers. I hate it! Maybe one day soon both of us will finally get a diagnoses and get better soon! Good luck!

Hi Sue, been keeping up with you, wondered what the “you are just fine” means? No myastenia gravis? Are things getting a little better for you since your friend died? Think of you often and praying that you find your answers.
Emma

Hi Sue! Glad to hear it was not Myasthena Gravis. Whew! I react differently to medications too! If the pill is not right, I can’t take it! Hope you had a good weekend and was a little less stressful for you! Stress and depression can really take a toll on you having CIDP! Can aggitate the stuff more! So I hope that this week is much nicer for you and you feel better soon! Keep us posted though on what they find! Hugs

Hey Sue? What all kinds of symptoms are you having with this CIDP? Did you have GBS before the CIDP or do you just have CIDP of unknown etology? So many diseases can cause CIDP after reading up on it! Thanks to Terry leading me to some sites and me finding a few on my own that was very helpful.
Pretty darn aggrivating having something and you know you have something going on and not be able to get any answers. Very frustrating to say the least!
All this medical technology we have today and here we have thousands still without cures or getting treatment! I hope that MRI gives you some answers but don’t give up! We still have Hope! Hugs

LindaH

Hi Sue! Hope that MRI shows something for you. Sometimes the spine can do some crazy things too. A compressed nerve can cause nerve damage and tingling also. I sure hope you get a diagnoses and treatment soon. Not fum dealing with this stuff and not knowing what is causing it is hard to deal with. Glad they found my problem and hope that the CIDP was caused by this thyroid problem and nothing else. But I know how frustrating it is!
Worst part is trying to work a job and being sick at the same time. Getting on disability is a major pain today! I feel for you. Really do! Hope you get answers soon! Hugs Sue!