[AddyNat]

Hello all!
I have been lurking here for a few weeks and everyone seems really helpful and supportive! I hope you can help me figure out if I'm on the right diagnostic path. I'm a 35 year old mother of two, so I really need to find out what's been going on with me, so I can get treatment and live my life! This is probably going to be long, so thanks in advance for reading!

Here is some background on my health, which may or may not make a difference:
Left eye -- severe congenital myopia, multiple retinal laser surgeries to fix peripheral degeneration, cataract removal, IOL adjustment.
Right eye -- legally blind since birth, retinal detachment in 1994, eye removal in 2004. Currently wear a prosthetic.
ACDF (anterior cervical discectomy and fusion) C5-7 -- disc herniations pressing directly into my spinal cord.
Hashimoto's Thyroiditis -- Dx earlier this year.
Mild Sleep Apnea -- Dx this past month.

OK.... so, I am currently having problems with terrible muscle fatigue in my hands, arms and legs. Not bad enough that they stop working, but I can't do anything for very long without resting that body part. When I explained to my doc that I was having trouble holding on the steering wheel, hair dryer, etc., he mentioned myasthenia gravis. I had researched some other autoimmune diseases, thinking that I might have something in addition to Hashimoto's, but nothing quite fit. But when I checked out MG... holy cow! Everything is scary familiar!

About a year after I got my prosthetic eye, my eyelid started drooping on and off. It would be worse in warm weather or after a hot shower. I just assumed it was my new eye settling in (and maybe it was?). When I had my newer eye made, the ocularist built it to prop open my eyelid better.

Last Christmas, I got these on and off attacks of blurry vision and light sensitivity. I saw my retina and cornea docs, and then a neuro-ophthalmologist. They couldn't find anything new wrong except a little dryness. I've been consistently moisturizing my eye, but it still gets randomly unfocused and more light sensitive than usual (especially at night, with headlights and such).

Anyhow, the eye issues were followed by breathing problems and chest pains, joint pains and temperature dysregulation. I spent a lot of time at the doctor's! Finally, I got diagnosed with Hashimoto's and the levothyroxine I was prescribed has been helping. I can definitely feel a difference.

Also, after I hurt my neck, I had to wait 3 months to get my spinal surgery. During that time, I had tingling and numbness in my hands and arms, which the doctors expected. However, I also had progressing weakness in my feet and legs (had trouble with stairs, leg dragging behind me), that they thought was unusual. I also started having trouble breathing, especially at night. I would wake up gasping for air if I lied on my back and had general breathlessness. I thought this was all from the surgery or medications, but now I'm wondering... I still have breathing issues occasionally - like my breathing pattern is off somehow.

So, here is the problem... my doc tested my AChR and it was negative. I see a neurologist on Monday and I'm wondering what the likelihood is that I could still have MG. I figure the neuro will test my MuSK and maybe do a SFEMG? If those are negative, too, do you think I'm barking up the wrong tree? I just recently went back to work (super p/t - 6-9 hrs/wk) and I'm finding it hard to handle even a 3hr. shift.

Thank you for your help!

[pingpongman]

There is a real simple test for drooping eye lid. Next time it happens put a bag of crushed ice on it for about 1 minute and see if it improves. Another simple test is to get your neuro to give you Mestinon for a trial period to see if it improves your symptoms. A lot of us started out with negative results.
Mike

[limpy]

You may also want to be checked for LEMS.

[AddyNat]

Thanks for the ideas! My prosthetic eye does a pretty good job of keeping my eyelid propped up, so I don't think testing it with ice will do much. I have a feeling that will end up being a giant "maybe" for the neuro. Is it common for doctors to be willing to try out mestinon without a formal diagnosis? Is the treatment for LEMS similar to MG?
Thanks again!

[bny806]

Hello and welcome! And, so sorry you are having to deal with all of this - I am 33 years old mother of 2, and have been sick for 3 years... So, I know how hard it can be trying to work and take care of the family/kids etc!!!

Anyhow, I agree with the others - did they check for LEMS, did they check your CPK (total ck), aldolase (those all check for myositis/myopathies).. have they done a regular EMG, MRI of your head (obviously sounds like they have done MRI's of your neck already).. Many Myasthenia patients don't test positive for the basic tests.. They can also do a repetitive stim test as well as the SFEMG...

Good luck, and keep us updated!

[AddyNat]

Thanks bny806! I saw the neuro today. He did some basic neurological tests, but didn't really take a history and seemed somewhat disinterested. I had to really stress to him that I was concerned that it could be MG. He noticed that my AChR wasn't run at the Mayo clinic, so he agreed to re-do my blood for AChR and MuSK.
I had a slightly abnormal EMG prior to my spinal surgery. And a normal one about six months following. I have had MRIs on my brain, neck and lower back. Nothing abnormal except the titanium in my neck! . The neuro today did note some spasticity in my left leg, but it was minor.
I guess I'll wait on the blood tests and if anything, ask my primary doc about a single fiber EMG and CAT scan of my thymus?
Ugh! I'm so tired of spending time at doctors' offices! :/

[bny806]

yes, it is SO frustrating spending time at Dr's offices in the first place, especially when it seems you get no answers, or everyone just seems to be dragging their feet.. They kept running lab tests and waiting weeks for results, if negative, would run more then more weeks.. all while I wasn't able to hold my children, hold a fork, finally couldn't breathe and had to get admitted..

Have they done an LP (lumbar puncture)?

[AddyNat]

No, I've never had an LP. What is that used to diagnose?
I'm sorry to hear that your breathing got so bad you had to have a hospital stay. That's the one thing that really concerns me (and I think that's what convinced the neuro to re-run the tests)... I've had breathing issues and I'm so afraid of being home alone with my young kids and having my breathing get really bad or stop! It only got bad enough once for me to go to the ER, but by the time I actually decided to go and then waited to be seen, my breathing regulated again. Scary stuff!

[bny806]

oh yes... been there.. when my hubby would go out of town, I would tell him he needs to call first thing in the morning and if I didn't answer to have someone come to the house.. I didn't want to be dead and my two babies in the house without anyone.. it was scary.. it's hard to imagine being that way now... it's like a bad dream!

LP is usually done in people with "mystery" muscle weakness/neuro symptoms it can help diagnose MS, neuropathies like CIDP/GBS, lyme, other weird neuro stuff..

how have you been feeling? my respiratory weakness comes and goes as well.. when I crashed it was about a 3 day period that I was losing ground big time.. I couldn't even suck a straw, purse my lips or anything.. I did the Pulmonary function testing and almost passed out barely getting it to 70.. couldn't read a book to the kids- every few words I would huff and puff to breathe.. it was crazy! Hormones majorly affect my symptoms- do they with you?