Hi everyone, I saw the new doctor today (neurologist) and I am a little confused by what he said.
First of all he did not give me any Botox. Given my track record with Botox (not getting good results) he wanted to check out some other alternatives.
Second, he wants to check me for Sjogren's Syndrome which is a disorder that involves dry eyes, dry mouth, dry skin, etc. I do have all of of these symptons plus some other symptons that were mentioned. I had to get a blood test for that. He said He should know something in approx. a week.
Third, He also is checking me for Myasthenia Gravis. I looked it up on the internet but could not really understand why he would think I might have this. If I understand it correctly it has to do with the auto immune system which includes muscles weakness, Lupus and some other disorders. They took 4 vials of blood altogether. What puzzles me also is the fact that my primary care doctor told them to check me for this when I was refered to them.
He will call and let me know when to come in for the Botox. He wanted to wait until someone else needed it so we could share the bottle. Also he likes to wait 3 months between injections. My last injections were Feb.18 when the plugs were put in my tear ducts.
I really had wanted to see another doctor in this group because I had heard he gave the Botox injections and was very good but he could not see me until may 7th so they scheduled me with this doctor who is also suppose to be good with Botox. I thought the whole purpose of seeing this doctor was because I needed the Botox now not two weeks from now, but it looks like it will be that long any how.
If anyone could explain the Myasthenia Gravis to me, I would appreciate it.
Joyce in NC who now has a bad headache. A front is going through so maybe that is why I awoke up with it and also the let down of not getting the help that I thought I needed. O well, that's life. But I shall not be discouraged. There is a reason and a purpose for all things and I will just have to be patient.
Re: New Doctors update |
Hi Joyce, sorry that you are having such a bad time of it. It certainly won't hurt to get the other things checked out. I'm no expert on Myasthenia Gravis and wouldn't be able to tell you anymore than what you found on the internet.
Apparently your primary doctor wanted these things checked out as you haven't responded well to the BOTOX or the two surgeries. You have said that the BOTOX doesn't work for you so your doctors may just be trying to cover all their bases and see if there is something that they are missing. Sounds like a good thing to me. Doesn't hurt to check things out. (except for the blood drawing :-( )
Have you been able to tell if the plugs in your tear ducts have helped? Did they do upper or lower tear ducts?
Call them in a week and ask if they have any of your lab work back yet and ask for the results.
Hope that your headache is gone by morning and the front has gone through.
Shirley in Arkansas
Re: New Doctors update
Shirley, would you believe??? This morning on the local TV station there was a segment on Sjogren's Syndrome. This lady told how it took 6 years to find out her problem. She is taking medication now and her symptoms are better.
I do believe that I have the BEB but my dry eye problem could be from this Sjogren's Syndrome. I use enought ointment at night that I should not have problems with dry eyes. About the plugs, I had one bad episode since getting them when I woke up at 4 pm (the magic hour) with what literally felt like cut glass in my eyes. I could not open them because of the pain. I went to a local ophthalmologist that I have seen in the past and he said it was dry eye. He put numbing drops in which helped tremendously.
The doctor said that he would call me in about a week when the results of the blood test came back but if he doesn't call I will be calling him.
Joyce in NC - my headache is gone and I feel much better today. A good nights sleep really helps.
Re: New Doctors update/joyce
Aren't some of your other moist membranes very dry in Sjogren's, especially the mouth? that can also be a side effect of some of the meds we take.
--modified by Kathy in Atlanta at Tue, Apr 23, 2002, 10:25:04
Re: New Doctors update
When I was first diagnosed definitively with BEB (6/01) there had been a lot of suggestions (prior to that time) that I had Myastenia Gravis since I have thyroid disease. As you know MG is an autoimmune disease almost the complete opposite of BEB. In the case of MG, your immune system attacks your achetylcholine receptors so that your muscles do not perform. One of the first signs of the disease is the inability to open the eyelids. MG is treated with a drug (mestonin) that helps to increase the amount of Achetylcholine in the neuromuscular junction. With BEB--our nerves are constantly firing and producing an excess of achetylcholine that causes our muscles to constantly contract. I was treated with a very low dose of mestonin and my eyes actually got worse. MG can be a systemic disease (Onassis had this) or it can be isolated to your eyes MG Ocular...There are two different tests for MG--one involves a blood test and one is called a tensilon strenght test (involves an injection). In one of the recent newletters a woman said she was diagnosed with both MG and BEB and the doctor said see another doctor because you cant have both. Neurologists were so convinced I had MG I actually joined an MG support group. Alas, I hope this helps. I am a terrible speller and typist. I wish you the very best. Dont despair! Ellen in DE
Re: New Doctors update
I suffer from dry eyes too. The left one is the worst. Since my surgery my left eye does not close completely. I had the upper duct cauterized and plugs put in the lower ones. I hate to think how bad they would be now without having the plugs. I have tried several different ones as some fell out but I now have had these one since September and these feel good.
I posted a while ago asking if any one has heard of making your own tears but did not hear from anyone. I think I saw something about it on the www.thyroidfoundation.org. I will check with my doctor on my next visit.
I had my thyroid removed years ago and believe there is a connection.
Catherine in Calgary where we got even more SNOW!!!!!!!!!!!!!!!!
Re: MAKING YOUR OWN TEARS!/Catherine
How you do you go about making your own tears, Catherine?
June in Toronto (beb/meige) where our snow as gone again - hoping for a nice day today.