Question about my DR’s Visit

    • Anonymous
      September 2, 2008 at 10:47 pm

      I went to see a new Neurologist today only because my other neurologist wanted me to.Well he asked me lots of family history questions. He also notice I don’t speak clearly. I try but sometimes I don’t realize I do this. Well he left the office for while and I saw he wrote on my chart dysarthria. I didn’t know what that was.
      Well he asked me if I had any problems with my eyes or eyebrows I said no. But it just don on me that yes for the last few years my eyes get very dry and last year in the fall I notice when I was driving my eyes would be very blurry mostly when I am tired. I have a hard time to see the speed limit on the signs my eyes get that bad. I been having problems with dry eyes for the last few years and this year I had a hard time to do my eye test because they were so blurry like an aura around the letters. He brought up the fact of my eyes and eyebrows again later. Well I was doing research of my nerve test when I notice the word dysarthria and in the article it mentions Myasthenia Gravis.
      The symptoms are blurred vision slurred speech and The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. The last part about having muscle weakness that improves with rest is exactly my story.
      I had problem walking when I was a child around 4 years old. I couldn’t walk straight my mom would have to hold my hands so I wouldn’t fall down. I would take one step forwards 2 step backwards. I also now remember most of my life at work I wouldn’t walk a straight line to the cafeteria.

      Now I wonder if I have Myasthenia Gravis. I forgot to tell him about the way I walk at work. I just called and left a message about my vision problem now I think I will call back and tell him about my strange walking at work and ask if I can get the blood test to see if I have this disease.

      Why is it you always forget stuff to tell the DR.
      I hope he gets my message. He is the head of the Neurology department at the hospital and his name is listed in the Canadian version of GBS/CIDP Newsletter. I hate to bug them but I will call back and I will let you know if I get a response from the secretary this week.


    • Anonymous
      September 2, 2008 at 11:03 pm

      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.

    • Anonymous
      September 2, 2008 at 11:32 pm

      Cheryl you said 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”

      I am sorry I don’t quite get what your saying ( I have a learning problem if you don’t mind rephrasing it 🙂 ).
      I work in a factory where you do the same job for 2 hours at a time then you may get switch jobs for the next 2 hours. Usually we do about 12 to 20 units per minute so it gives maybe 3 to 4 seconds to get a board and put it in the box and when you get down lower to pick up a board and have to get up to put it in the box. I can’t keep up with the pace. I was never the fastest one at work. It was always a problem with me speed especially as the years rolled by they speed up the production line faster and faster and it made it harder and harder on my body.

      Thanks for your reply


    • Anonymous
      September 2, 2008 at 11:53 pm

      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!

    • Anonymous
      September 2, 2008 at 11:58 pm

      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.

    • Anonymous
      September 3, 2008 at 5:12 am

      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!

    • Anonymous
      September 3, 2008 at 6:33 am

      Hi everyone I have seen 2 Rheumatologist in the 19 months and the blood work doesn’t show anything wrong except that I have tendinitis.

      We have medical issues in our family. I lost 2 brother when they were teenagers to the sane lung disease. My dad has everything wrong with him. Heart problem, blood pressure problem, diabetes, stroke, back problem. My brother heart problem breathing problem and back problem and 1 sister had breast cancer and got 1 breast removed.
      I am just thinking on how the DR brought it up more then once the question about my eyes and eyebrows and made me wonder why is it so important?

      I will keep you all updated as I get more news.


    • Anonymous
      September 3, 2008 at 4:58 pm

      I got a call on my answering machine from the secretary of my Neurologist and she told me that he got the information but that I was fine. No problems to be concern about.


    • Anonymous
      September 7, 2008 at 4:28 pm

      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.

    • Anonymous
      September 7, 2008 at 4:44 pm

      Hi Emma yes No myasthenia gravis. Which is very good new. My nerves are almost working at 100%.

      Well since May I am having a hard time at work mentally. Today I realized it might be one of my meds. i got it increased in May but they gave me different generic brand then what I had on the lower dose. Just saw the pharmacist today and they going to order the other generic brand and when it comes in he will replace them for me.
      It’s my depression pill. Since May I have been feeling worse and worse and it’s at a major depression. Trying to deal with that is more then I can handle right now but somehow I always find a way. I have no choice.

      Thanks for your prayers


    • Anonymous
      September 7, 2008 at 7:32 pm

      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

    • Anonymous
      September 7, 2008 at 7:44 pm

      Thanks Linda and you take care of yourself.


      I had an MRI of my lower back on Friday and it will about 7 days for my DRs to get it. So it might just come in around the time my family DR comes back from holidays. I will call his office and ask for him to call me with the results. His office is 50 minutes away and I would lose to much time from work for him to tell me everything is OK or not.

    • Anonymous
      September 8, 2008 at 2:55 am

      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


    • Anonymous
      September 8, 2008 at 6:44 am

      Hi Linda I don’t know if I had GBS. I had symptoms symptoms of GBS but because it seem to last more then 8 weeks it’s CIDP.
      But I wonder if I had a mild case of CIDP and now with all the residuals plus Tendinitis not related to that at all.
      I went to the ER around week 7 because of my hands and feet but I was still working. Never lost work except to see DRs.
      But I had a fall at work about 4 months earlier and I that it is still bothering me. Plus the tendinitis which could be a work related injury. I work on a production line. Been there right now 24 years.
      So I feel the CIDP residuals are some of my problems like lack of strength tired faster. But the tendinitis is causing me more problems.
      So I feel that CIDP is 20% of my problems the rest is Tendinitis back problem.


    • Anonymous
      September 8, 2008 at 9:03 am

      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!

    • Anonymous
      September 8, 2008 at 4:55 pm

      Thanks Linda you take care.