Mestinon
 

Hi MG'ers. I am currently in the middle of a workup for a diagnosis for symptoms that have been progressively been ailing me. I do have a documented Neuropathy in my feet. I have other symptoms that fit within a sort of MG category such as facial weakness, breathing and chewing weakness, weakness all over, I have a documented diplopia in my left eye, my eyelids droop.. etc etc. All of my test results seem to come back normal... I've had an LP, MRI, tons of blood work... the only thing that shows up is my neuropathy in my EMG. Also my blood ox is down a little bit.

My Neurologist said she thinks I have a polyneuropathy with a demyelinating component... most likely triggered by something toxic. She's currently researching that. I have requested that she test out tensilon on me, just to see if it has any effect on me. But I wanted to pose the question to the group of this:

Does anyone know if any Neurologists have tried a small dose of Mestinon on patients, just to see if it provides any relief? I want to ask my Neurologist to try this. I know that it's possible to have more than one Neurological condition and what if I have two Neurological conditions that are overlapping that are confusing things? Would it be worth a shot? What would the harm be in trying and how expensive is Mestinon if my insurance won't cover it because I don't have MG documented at this time?

I hope you are all doing well. I look forward to hearing back from you about this.

All the best,

Hankster1

My neurologist had me start mestinon as a diagnostic tool. If it worked, he figured that I have MG. It does help a lot for me. He said that nothing else really responds to it. I'm not sure if he is right or not, but at least I have some help from the drug.

I have the symptoms of MG but my antibodies are negative. My neuro optomologist started me on mestinon when my symptoms got worse - started falling. Mestinon helps a lot. I am still waiting on the SFEMG later this month for the definitive diagnosis. My insurance covered the mestinon even though I am just a probable MG. I threw away the receipt but I think it said a 30 day supply was $90, I only had to pay the co-pay.

I had RSD 20 years ago which is under control now. SO I would not rule out 2 neurological things going on. When I first started with symptoms, I worried that the RSD was coming back but the symptoms did not fit.

It is also common to have more than 1 auto-immune disease. Did the neuro think the polyneuropathy might have an auto-immune component?

Talk it over with your neuro. DId they run any antibody test?

Good luck,
kathie

Hi Celeste and Kathie,

Thank you. I do not know whether my Neuro thinks my Polyneuropathy has an auto-immune component or not, I will ask her when I see her on Tuesday. I do know that my symptoms are progressing every day.

She does this test where I spread my fingers and try to resist her squeezing them together, and I've realized in the past few days that I can barely spread my fingers, let alone resist someone squeezing them. This is an entirely new symptom, though I was weak at this previously. My exhaustion has also increased, I just wonder how much further this can go before they try some sort of treatment out on me.

I believe I have had antibody tests run, and have access to all of my records. I had the two MG tests done and both were negative. Did you know of a specific name of a test that I can look into?

Thanks :)

Hankster1

Hi, Hankster. A lot of neurologists are willing to prescribe Mestinon (generic: pyridostigmine bromide) for people with only suspected MG. If it works, that's evidence (though not conclusive) of MG. If it doesn't, it doesn't mean too much, since many MG patients don't respond to Mestinon.

We have a lot of seronegative people here (blood tests negative) who are diagnosed with myasthenia gravis. It's quite common. I've seen statistics up to 20%, but I suspect the real number is much higher.

Many of us seronegatives (including me) were diagnosed by single fiber EMG. That's not a regular EMG. With a SFEMG, the doctor inserts a thin needle in the muscle and leaves it there while the patient slightly clenches the muscle and holds it (no shocks). It's considered very accurate for diagnosing MG, but not fool-proof.

There are three different antibodies that are commonly tested for with MG. The first is anti-AChR (acetylcholine receptor) antibodies. Patients with MG-like symptoms who test negative for this should be tested for anti-MuSK antibodies. The third possibility is Lambert-Eaton Syndrome (LEMS), which isn't MG, but which causes similar symptoms.

I hope you get answers soon. Please feel free to ask questions here. We would all be very happy to be able to help.

Abby

Hi Abby,

Thank you for your response. So I have had an EMG with the shocks and the needle, but I have not had the SFEMG. I will inquire with my Neurologist about this.

I did have the anti-MuSK test and the anti-AChR test and tested negative for both of those.

I found a link on neurotalk to lizajane.org and will be creating all of those spreadsheets prior to my appointment on Tuesday. It's a wonderful website for anyone who hasn't been to it.

My other issue is that it hurts to push on my stomach right below where my rib cage comes together. This pain has increased over the past week or so. I did go to the ER for chest pains and they thought it might be GI related. I have not had any GI tests. I have seen a pulmo and do have some pulmo issues that I will be following up on - my lungs are not affected but my muscles are affected. I am going to inquire about a phrenic nerve test - this has previously been brought up to me.

Has anyone had GI issues related to their Neuropathy or MG and do you know of any specific questions I should ask or tests I should request? I feel that I'm hitting a point where I need to follow up on this.

One more question. I feel like my strength is all gone. Is there any way to test for muscle strength or to see if my muscles are gone? I do know that I am losing weight but I feel that I am eating well. I would like to inquire about this as well.

Thank you all for your help with this. This is such a huge learning process, I am amazed at everything you all have had to learn as you have gone through this.

All my best.

Hankster1

I have intestinal issues as well. MGers often have more than 1 auto-immune disease. I think my intestinal issues are another auto-immune disease because they subsided after a few weeks on anti-inflamatory meds.

I would follow up on the intestinal issues, it sounds like the pain I used to get with gallbladder.

But I also get a similar discomfort with MG in my side which I think is weak intercostal muscles. I also get discomfort in my chest due to weak pectoral muscles.

From what I read the SFEMG is the definitive test for MG when antibodies are negative. Someone in another post mentioned a QMG, which I never heard of. It looks like an assessment tool for MG. Here is a link: http://www.myasthenia.org/LinkClick....s%3D&tabid=125 .

Good luck with your appointment,
kathie

When I first started having MG symptoms, I also had terrible abdominal pain. I was checked for gall bladder problems, appendicitis, colon issues, and everything else that they could think of. I never really got a diagnosis. The majority of the problem spontaneously went away. I don't know if it was MG related or if I had some sort of undiagnosed disease.
I have some weird muscle discomfort in my upper abdomen that I guess I am just going to have to live with.

I am still a mystery diagnosis, but take IVIG.. All I can say is I know how you feel!! I felt like I was going to drop dead, and no one was trying anything to treat me.. they kept running test after test, but it would take a while for those to return, and they would be negative, and then they'd run more.. meanwhile I was decompensating.. Finally I couldn't breathe and they admitted me for IVIG...

I too lost weight, ,but I had awful GI issues.. they preceded the neurological symptoms.. I was getting worked up by a GI dr when I told them my knee felt floppy, I can't smile anymore - my face didnt' work, and my hands felt funny.. they thought vitamin deficiency, but besides Vit D, all else was normal (well I was b6 toxic).. Anyhow I get awful pain in the left upper quadrant of my stomach (below my ribs).. everytime it flares, i feel awful pain and then the rest of the fun starts.. My scopes from GI showed gastritis and esophagitis, but that didnt 'explain the malabsorption issue.. they thought maybe crohns.... then a few weeks ago my sibling was diagnosed with crohns.. so I may have that - who knows!! IVIG helps it though, and "fixed" it for months after the first loading dose

Hi MG'ers and Mystery Diagnosees. I hope you are doing well. bny806, I have read your message a few times and have so many questions for you!

I wanted to update everyone on my Neuro appointment. After my Neuro spoke with my Pulmo, she started asking me if I had inhaled anything, had any history of inhaling anything. And then I remembered that they're doing construction across the street (to a school) and they keep using tar a couple of times a week that gives me awful migraines. This started a few weeks before my symptoms started up again (prior to Thanksgiving) and it seems like a really interesting coincidence. So maybe?

Anyway, I get another EMG and a Phrenic Nerve test tomorrow. I get an EEG on Thursday (I'm staring all the time and I've never had one). I see the Neuro again on the 26th and I will likely start Steroids then. She didn't seem entirely sure it would help, but she said she had to rule things out before trying other treatments. So I'm totally open to it and I'm glad she's finally going to try something. Has anyone had positive experiences with Steroids? I'm actually fairly nervous about being on them, but I'm not going to turn a treatment down.

What she did say was that she absolutely does not know at this time if it's autoimmune based or inflammatory based. What she's most focused on right now is figuring on if it's affecting my motor nerves or my muscles. She said in females my age (I'm 30), this does tend to happen, where it's so hard to figure out and diagnose.

I am going to see a GI doc. I have lost 5.5 more pounds in the last 3 weeks, so I need to figure out how to at least hold onto the weight that I have at this point (bny806 - perhaps this could be a malabsorption issue like yours?) . She did not do the Tensilon test, but she did do blood tests for MG again. So anyway, it felt really informative and I'm optimistic that we're finally getting somewhere. I just need to stop losing weight and gaining new symptoms.

I hope each of you are doing well. I wish you all the best.

Hankster1