I posted this initially in new members introduction and was advised to post here, greetings everyone. New question Do you think it would be a good idea to ask for the MG blood tests while i am awaiting my appt. I am not sure why the Neuro did not order them

Hello all, so glad i found this place , I feel so confused and alone sometimes

I am a 56 year old woman who had been in generally good health for ten years except for smoking, I quit the day after my symptoms started.
I suddenly developed vertical double vision in November 2014, first night it lasted about three hours and i went to Emerg. It resolved by morning. Cat scan was ordered, but the double vision became a nightly ordeal. The cat scan with contrast was clear. I also began to feel tired and weak during my normal night shift and not myself. I was afraid they would take my drivers license away so i didn't go back to the doc as quickly as i should have. Within three weeks the DV was becoming worse and i had a spell at work where my legs felt wobbly and i was getting pains in my arms and chest when i exerted myself so i went back to emerg . They did tests to ensure i had not had a heart attack and kept me over night. An MRI was ordered and a few days later my double vision became an all day event so I went on sick leave and that has continued to this day. I also began to have right sided paresthesia in my arm leg and side of face. Sometimes this was severe. My head would feel like it was under pressure. The MRI came back clear except for fluid in mastoids. I was also scheduled for a cardio work up- doppler, echo and stress test and those results were ok. Opthomologist thought it could be a fourth nerve palsy. I was referred to a local neuro but did not see him till February 2,it seemed after i had the clear MRI no one was in too big of a hurry. The neuro tested my double vision and did a standard neuro test and nerve conduction on my right arm only. He wants me tested for ocular myasthenia and I am going to a Neuromuscular clinic , the appointment is not till march 25. He did not do blood work or order a EMG. He said ocular myasthenia was not myasthenia gravis and did not seem too concerned about my other symptoms as i presented normally in his office. Meanwhile i still have the paresthesia and aching in right leg and arm plus when i wake up in the morning my right side feels asleep. At night i get a lot of random twitching in my arms legs and shoulders, even feet, i forgot to tell the Neuro about that . I tire very easily and a short walk to the grocery store can do me in. I often feel stiff in the small of my back and it radiates down my legs. My double vision is still an all day event except for about 15 minutes first thing in the morning and then it devolves quickly. The tingly feeling in my right arm has spread to my chest and down my back. The back of my throat feels a little stiff sometimes but i have no issues speaking or eating. I phoned the neuro office to ask for another consult to discuss these issues but was told by the receptionist that i would need another referral from my doctor for ohip reasons. My own family doc said all these things would be addressed at my appointment at the NM clinic hopefully he is right . Incidentally the orthotic specialist the opthamologist sent me too said I was not presenting like fourth nerve palsy,he was not sure what was going on with my eyes and didn't think prisms would help at this time so I am still wearing a patch. I asked if there is anything else they might consider checking me for besides OM and he wrote down LEMS and said i could look it up. Something else to worry about ! The neuromuscular clinic i have been referred to is considered the top in the province but some of my symptoms do not seem like MG. About 10 years ago i had some of the same symptoms , i had the right side paresthesia, felt dizzy, i had bad headaches at that time but no double vision. All my tests were clear and i slowly got better over the span of about 6 months. I know my docs at that time thought it was all in my head. Since then I have been pretty healthy and had impeccable attendance at work. To be back in this situation is a nightmare. It sometimes feels like gremlins have invaded my body. Any insights or suggestions would be appreciated. This is going to be a long month til my appointment I find it very difficult to talk to doctors likely because of my bad experience from years ago and i want to make sure i make the most of this appointment

Sorry that you feel so bad. As I see it, you have some symptoms that sound like MG, but also some that I have not heard mentioned by others on this site, or by me either. The double vision is something I can relate to and also the weakness. The pain does not sound like MG or the paresthesia.I have had MG for apprx. 6 years, and my symptoms have always been pretty classic MG. Meaning double vision at times -weakness chewing -some speech problems etc.
I hope Mrs D or Annie answers you, because they are way ahead of me on this. Sure hope you get some answers soon to feel better.
FREDH

I agree with Fred, but one thing I want to suggest is that you write down your symptoms as they occur so you won't forget to tell the new neuro about them. I know how scary it is to go to a new doc and how easy it is to get home and think, "Why didn't I tell him/her about this or that? How dumb am I?" Well, you're not dumb, just human. So maybe do a log for a few days and then see if you see a pattern of the symptoms and try to categorize them all together. They probably aren't going to want to read a month long log, but if you can say, in the mornings I tend to ..... and then in the afternoon this happens. Or In the morning when I wake up ..... It will help you and your doctor see the pattern of your symptoms.

They probably won't order the tests until you see the neuro - some of your symptoms appear mg-like and others, not so much.

Here's hoping you an get an answer to your questions - it is so frustrating to know something is wrong, but the docs can't figure it out. Good luck!

Hi, others have given you some great suggestions. It is important to keep a log of your symptoms, what made them better, what made them worse, etc. Many of your symptoms sound like MG, others not so much.

When I read your post it made me think back to when my symptoms started. Double vision that was mostly later in the day, and then eventually became continuous throughout the day, though worse at night. My doctors also felt it was a fourth nerve palsy when my MG tests initially came back negative. In fact, I really felt that they just used that as a "default diagnosis" because they didn't know what was happening. My arms ached and ached. The docs just thought it was from statin drugs I was taking. Turned out to be weakness in my arms.

Interestingly, I also have the twitching in my legs, feet, and occasionally arms. My neurologist feels that it might be related to fatigue in my muscles. I also had paresthesias and that really cloudied the whole picture. Paresthesias are not really associated with MG; however, you can have more than one thing going on right now. It turned out for me that I also had some peripheral neuropathy.

Hang in there. I know it's hard and the waiting is excruciating. Do keep track of your symptoms and when they occur. When you have your appointment, try to bring another person along to the appointment. Perhaps your partner or family member can concur with your description of events. They also might remember things that you don't recall.

And do remember that symptoms can quickly change. For me, lack of sleep or stress are major triggers. If you start having difficulty breathing do get yourself to an emergency room.

Keep asking questions and using this forum for support. There are lots of great people here.

Cate

Thank you so much for your helpful suggestions, the log is an excellent idea and something constructive I can do while waiting. Trying to make sense of all this. It helps to know there are such helpful knowledgeable people here.
Canuckmiss

Thank you Cate for your sharing your story with me and your insights. A lot of your symptoms do sound similar. Has your double vision improved, I am concerned that the longer this goes undiagnosed the less chance i will regain normal vision. The neuro said sometimes it resolves by itself but i have not had a lot of change in almost three months. How did they treat your neuropathy . I have not had trouble breathing yet although sometimes when i get the tingling feeling in chest it feels like there is a light hand on my chest, it does not impede my breathing but i am aware of it. Thank you again for your help, C

Hi, canuckmiss. Welcome!

First of all, ocular MG IS MG. There's no distinction between ocular MG and generalized MG other than what area it is affecting. And it doesn't sound as though you only have ocular!

Most of your symptoms do sound like MG, and the fact that it is fatigable weakness (and double vision), which is the hallmark of MG.

You also sound as though you could have a B12 deficiency. Have you had that checked? It's amazing to me how many neuros miss that!! Did you know that you need B12 to make acetylcholine in the body?

A vitamin D deficiency is also quite common. Ask your primary doctor to do some basic tests!

You might also have celiac disease. People can have more than one thing going on at once.

You don't sound as though you're in good shape. If you become much weaker, can't breathe or move well, or can't swallow, that's the time to dial 911. It doesn't matter if you don't have a diagnosis.

Has anyone checked your O2 level? If so, do you know what it is?

How is your pulse? When MG gets worse, and the O2 drops, the heart works harder to get the body oxygen, which raises the pulse. So watch for that. Know your normal pulse!

Gremlins, eh? That does sound like a B12 deficiency. I've had one and it can cause a lot of symptoms, such as severe fatigue (at all times of the day), numbness or tingling in hands, face, or feet, hypersensitive nerve feelings in those areas plus the lower back, palpitations, bad headaches, and so many other symptoms.

This is not all in your head! What nonsense. You have very obvious, provable symptoms, such as the double vision. Have you seen a neuro-ophthalmologist for an evaluation? That's a great idea!

Seeing a pulmonologist for any breathing issues to more clearly define what is going on is good, too. MIP and MEP are specific neuromuscular disease breathing tests that they can do. They should also look for trends in those tests to see if you have a downward trend!

How else can we help? In the meantime, take it VERY easy. Don't get too hot or too cold (can make MG worse). Keep a phone handy in case you do have to dial 911. Let other people know how you're doing.

I hope you'll get help soon.

Annie

Dear Annie

Thank you for your insightful response. I have been treated for B12 deficiency for a number of years, I take B12 every day 1000 units methylcobalamine. My doctor did some blood work about a month ago including b12 levels but did not indicate my levels were of concern I will check what the levels were at that time. I recently started taking vitamin D on my own initiative but my levels have never been checked. IT is interesting that you mentioned the raised pulse rate. Since December I have had periodic episodes of fast pulse especially after I have had one of those attacks of paresthesia, they even had me on a halter heart monitor for 72 hours. The conclusion was that the heart rate was elevated sometimes but not irregular so they were not too concerned. This morning i had one of those odd attacks of paresthesia in my right leg and arm and knot in the side of my head after two days of feeling relatively well, afterwards my heart rate was quite rapid. I wanted to see an optho neurologist but since they made this appointment with the NM specialist, i was unsure if i needed to see both. But i will try and see if my doctor will refer me even as a second opinion as i sure would like some answers. Thank you again for your suggestions.
Canuckmiss

Well I had my appointment at the neuromuscular clinic yesterday, i filled out a questionaire and they did a single fibre emg, and electrical pulse test. The sfemg was normal and since it is 95 percent accurate they felt a blood test and further testing would not be required. So as far as they are concerned I do not have MG and they are referring me to an optho neurologist for my double vision and back to my neurologist for my muscle issues. They also did a regular neuro exam , reflexes , strength test, etc. Because the referral from my neurologist was specifically for ocular myasthenia testing , i did not have other tests. Because I do not have MG they feel my shortness of breath is likely caused by some other condition. They were good about asking questions but even though i had written out a list of my questions and my symptoms, i still feel like i could have done some more research. One thing i have learned is that make very sure the person doing the referral is not too specific and lists all of your concerns in the referral , otherwise they may not be addressed. This is very true in canada where there are rules criteria . Although we did discuss my physical symptoms, leg issues and parethesia, they were most interested in the double vision which is why I was referred but that is only part of my problems although it of course is important. Although not their specialty they felt my eyes are presenting like a fourth nerve palsy and even suggested a mini stroke which i have had already been tested for and ruled out. The intern neuro that did the sfemg did suggest that all my symptoms could be from an auto immune response from a flu virus i had shortly before my double vision began and subsequently my other symptoms. I had not listed this in my history as i had forgotten about it but she asked me if i had had any viral illness previously to my manifestation. It is too bad they did not suggest some testing to confirm this suspicion. So still looking, I would have liked another follow up with this clinic as after a days reflection i have more questions but it looks like i am moving in a different direction. I am relieved not to have MG but also have a little niggling concern that I might still have mg as it seems so many people here have had a lot of negative tests but still presenting with symptoms. I will ask my doctor about getting some breathing tests, he did not want to do any testing before i went to the neuroclinic as he thought that might be addressed if i had a positive diagnosis. Hopefully i will not wait too long for optho neuro appt. My learning curve is to make sure all your doctors are aware of any health changes or concerns asap even between appts. I kept a journal but looking back at it i thought , hey i should have phoned my neurologist about this. I know myself i just hate bothering people between appts or just cant bear the thought of talking to one more receptionist .But that is the reality of having a chronic illness.