Hi,
I'm new to the MG forum. I was diagnosed over 11 years ago with Multiple Sclerosis and was newly diagnosed a few weeks ago with Myasthenia Gravis.

Wondering if there are others with this combination, and what treatment do you take for the two. I currently take Tysabri for the MS, and Mestinon (generic) for the MG....but that combination will probably change when I go to the new specialist for the MG.

I have been experiencing MG symptoms for a couple of years, but the symptoms were attributed to my MS. I just love it when everything just gets blamed on the MS...ha ha.

So looks like I hit the auto-immune jackpot and have both. Are there others on here like me? And does anyone take Tysabri with Mestinon? (that combo is scaring me a little bit)
J

Hi and Welcome!

I think there is one other person here who has MS and believes MG too (but still doesn't have the official dx).

Thank you so much for your response. I figured this combo might be kind of rare. Onward & upward.....

Hi J,
Yes, I also have M.S. and M.G., the only meds I'm taking for it right now is monthly I.V.I.G. and B-12 shots every 2 weeks.
That has kept me on my feet for at least 7 years.
My main trouble is with my swallowing.
I started to go down hill in April and even though the doctors gave me 2 rescure amounts of the I.V.I.G. I just kept feeling weeker including my swallowing.

As of August 8th I've been living on a feeding tube. The doctor said it most likely will be temporary but I am still not able to swallow anything by mouth including my saliva.
It's a hard time for me and my family
.
The doctor is sending me for a 2nd opinion to see what exactly is causing the swallowing problem. I also called today to make a appoitment with a ENT doctor to see what he thinks.
They don't think its the M.S. causing the problem because my MRI hasent changed in a couple of years.

I'm not on Tysabri or Mestinon.
Mestinon did not agree with me, it did more harm than good, but I know it has helped alot of peaple with M.G.

My Neuro, hasen't put me on Tysabri because I was doing very well with the I.V.I.G. which helps both M.S and M.G.

Something I heard once that has helped me,
Rest when you can,
Work when you can,
and play when you can

Hi, J. Welcome.

I'm glad GrannyJo chimed in here. There are a lot of people who have more than one autoimmune disease. I have MG and celiac disease. Some people have MG and lupus. I'm sorry you have MG and MS. It might make it hard to figure out if it's the MG or MS causing weakness, which is an important distinction.

Nerve damage of MS can cause muscle weakness. With MG, it's all about fatigable weakness. So try to think of whether an activity has set off any weakness you might having during or after (up to days after) you do something. That sounds rather silly, I know. Not many people just sit around not doing anything!

Did you know that Tysabri can come with a risk of PML? You may not get it but you at least need to be aware of that risk, in case a doctor didn't tell you about it BEFORE prescribing it for you.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000289/

If you haven't already, you might want to get your B12 and folic acid checked. Even if you don't have a deficiency, B12 can help with the secondary assault to the peripheral nerves in MS. The sublingual form of B12 is absorbed by placing it under the tongue and going right to work in the bloodstream. The B12 shots are cyanocobalamin and have to be converted by the liver into methylcobalamin before the body can use it. I use Jarrow Methylcobalamin (5 mg). Some people like the Source Naturals brand. Studies have shown that daily B12 can help heal nerve damage, like after surgery, with shingles, etc.

I hope you can figure out what to do for treatments. I know that the generic Mestinon works for some people. My neuro insisted that I take the brand version. Why? The generic formulas are not the same and they may or may not be good enough. Generics are "copies" and not necessarily the same and don't have to go through the same rigorous clinical trials before going to market. Yeah, they're cheaper but sometimes not better.

Good luck!

Annie

Thank you GrannyJo & AnnieB for the replies, and thanks for the warning about PML. I am aware of that, but we decided that the benefits outweigh the risks. I'm sure I will be going off of the Tysabri once I go to my new neuromuscular Dr.

It is a bit frustrating right now as my Neuro who diagnosed the MG (and pretty much all of the rest of the staff) have left the MS clinic that I have been going to for the last six years. Don't know what happened (politics), but I am now transitioning to a different hospital with a neuromuscular Dr who treats MG. My MS doc will be joining the staff at the new hospital, but I am now in the transition period and technically without a Dr., and my next appointment isn't till the end of January. Ugh!

Anyway, the Mestinon helps my speech (and singing...yep, I do that professionally in addition to my other full time job). I am supposed to start taking the time release tablets at night in addition to the three regular 60 MG tablets I take throughout the day. So I guess I'll see how that goes.
But thanks again and I'll update when I know what course of treatment the new Dr advises.
Jen

Hi J, Yes I was also diagnosed with MS in 2001 but the neuro told me I had probably had it for 25 years already. One neuro told me I had the Progressive/Relapsing type and I was on Avonex for 9 months before my immune system crashed.

In April of 2011 I was hospitalized for what we thought a relapse and given 3 days of solumedrol. The doctor (hospitalist) ran some blood tests that had never been done before and the Acth antibodiy test came back positive for MG.

In June I had 5 days of IVIG, then 3 days for July, August, September, October, and one day in November before the neuro discontinued it. I go back next week to find out why he did that. I am also trying to take the generic of mestinon which is supposed to be 4 tablets a day but because of the diarrhea I can only take 2. I also take the Mestinon Time Span 180 mg at night.

At least we know we are not alone.

Gabriella

Hi Gabriella....thank you for your reply! It is good to hear from others who are in the same boat (so to speak..lol).

I take the generic during the day as well 3 X 60mg. Tonight I will start the timespan at bedtime. I can see that getting the dosage right on the Mestinon is going to be the tricky part.

I have to say that I am a little tense about the reports that I read on people having a MG crisis. In the past I have felt a little short of breath at times (which I told my Dr.), but now if it happens, I start worrying and then anxiety makes it worse. So I am training myself to try to put that out of my mind.

I do live in a small rural town though, so I think I had better alert our local Physicians Assistant and the EMT's to my new diagnosis. At least they would know what was going on without having to start at zero.

And yes, it is nice to know we are not alone!!!
Jen

Jen, Can you find your way to a pulmonologist? An MGer should really have both a neurologist and a pulmonologist. What they can do is assess your breathing right now and give you an idea of when you might need to come in, if it gets bad. Though with MG, you don't want to wait until it gets "bad" to go in! You want to get checked out when you are getting worse.

An MG crisis can happen suddenly. I'm not saying that to scare you but to prepare you for "what ifs." Knowing what to expect, how to react, etc. will really help. Having your "team" (neurology/pulmonology/hospital) in place really helps. You can get a peak flow meter (probably free from your doctor) and/or an oximeter to monitor how much oxygen you are getting. You can make sure you don't overdo it and get worse. You can have standing breathing test orders in place with the pulmonologist for when you do get worse. They can also do arterial blood gases to see how badly you are doing at breathing air in and out. You can make sure you never get too hot or too cold, which makes both MG and MS worse but particularly MG.

If you are an MGer that has trouble speaking, having a message on tape for a 911 call - in case you are alone during an MG crisis - is a good idea. "Hi, I'm having a myasthenic crisis right now and can't speak. This is a recorded message. I need an ambulance right away." Of course, some dispatchers might think that's a joke but you can actually call your local dispatch and let them know that you have MG and might not be able to talk in an emergency!

There are a lot of ways to set yourself up so that you don't have an MG crisis. Sometimes MG is really bad for certain people and they are more prone to it. Being aware of triggers like infections, stress, lack of sleep, heat, etc. will really help in avoiding one.

So . . . relax! I've had a crisis (2005) and they are not fun but I haven't had one since! No way would I want another one, so I take it easy.

I'm glad you MG/MSers can connect. I don't have MS but my lower leg neuropathy sucks. Having pain and weakness is not fair!

Annie

The Nonin oximeters are great (i.e., Nonin Go2 is $99) but there are other less expensive ones. It's really nice to have one!

Jen,

I don't have an official dx of MG or MS, but they are both on the table right now, and it is looking like i may have both. (brain lesion and oligoclonal bands point to MS. ACHR antibodies and striational muscle antibodies point to MG. Extreme paraparesis points to either one or both!) So I can relate, even though I'm just getting started with all of this.

I can sympathize with your fears about respiratory crisis. I had a respiratory crisis that sent me to the ICU about two months ago. Afterwards I was really worried when my breath felt short and I talked to my pulmonologist about it. He had the same advice as Annie just gave; and it really helped me. Have your incentive spirometer close by and know what range is normal for you. An inspirometer measures your lung capacity. That way if your lung volume severely decreases from your normal range, you will be the first to know about it. You can buy one really cheaply on amazon, or your pulmonologist can probably give you one. (search "incentive spirometer" on amazon or google to see several options. Some as cheap as $7)

Using the spirometer regularly also exercises your lungs and makes them stonger to reduce your risk of respiratory crisis. If you have decreased activity levels, this is actually a really important thing to do.

Another thing, as Annie mentioned, is to have a pulse oximeter. I got one for $35 and it's great. You can even find them for $20 (search "pulse oximeter" on amazon or google) Knowing your oxygen saturation levels will tell you how well your lungs are doing and how much oxygen your body is getting. This will be a way for you to feel reassured when things are fine and to be warned when they are not.

When I feel short of breath, or I am worrying about my lungs because they hurt, feel tight, etc, I pull out my spirometer to check my lung volume, and then pull out my oximeter to check my oxygenation. If both are fine, then I can genuinely because I am not just trying to "not stress" about it (which i was doing before). I actually know that I am fine. It really helps. You would obviously still want to make an appointment with your pulmonologist if something feels off, but you will know you are not in crisis if your volume is good and your oxygenation is good.

Best of luck to you, and hope to see you around on the forums (both MG and MS!)

Mandy