My BFS diagnosed as Autoimmune Disorder(Isaacs Disease)

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My BFS diagnosed as Autoimmune Disorder(Isaacs Disease)

Postby solarisle on November 26th, 2003, 6:50 pm

I went to see a neuro specialist in Autoimmune Disorders on Monday - my Neuro suspected my BFS may be related to an autoimmune disorder. The doc I saw Monday is fairly certain I have a mild form(for now) of Isaacs Disease or Syndrome. The prognosis is not very encouraging if he is right. The symptom that seems to be missing right now is the lack of severe muscle stiffness. He said only time will tell and there are no known treatments for the disease. They can treat the symptoms with a variety of drugs which may or may not prove effective. Every patient is different.

It's funny, I actually feel a little better now that I have a diagnosis even though there is no known cure for the disease.

Oh well, I will keep posting to let everyone who is interested know how I progress.
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Postby uber on November 26th, 2003, 8:45 pm

hmmm been reading up about isaacs, very similar to what I suffer from, but then again so is cfs, pd, fibro, bfs, ms, als, anxiety etc etc

what is the prognosis of Isaacs??
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Postby SusanSid on November 27th, 2003, 1:53 am

Solarile,
Wow, I can understand the worry part but can imagine that there is a sense of relief in certain ways. I have read about Issac's disease before. Would you mind telling us what your symptoms were and how that diagnosis was decided upon. Are there auto immune tests that give a definite diagnosis, or is it by symptoms only?
Hang in there and keep us posted.
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Postby Pole on November 27th, 2003, 3:11 am

Solarile

I read about Issac's Syndrome and (if I remember well) it's totally curable and prognosis are very good.

regards
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Why do you people torture yourselves like this??

Postby Dale on November 27th, 2003, 10:20 am

Why do you people torture yourselves like this??

Uber: why on earth would you be reading up on Isaacs? Is it helping your anxiety? How many hours have you spent researching it? How many hours have you been thinking about it? Can't you find something more enjoyable/productive to do with your time? What about all the advice that you gave "KERRI". Don't you think you could benefit from that advice?

SusanSid: this is a BB for individuals with BFS, not Isaacs. If you want information on it, I politely suggest that you find an Isaacs BB. This is not the correct venue. You asked how the diagnosis was made. Unless I'm misreading the post, Solarisle has not been formally diagnosed.

Solarisle: you haven't actually been formally diagnosed with Isaac's yet, correct? I hope that you don't have it and I hope that you are feeling better but PLEASE don't start posting this kinda stuff before you have been given a formal diagnosis. There are a few people here that go off the deep end when they read that kinda stuff.

Have you people ever thought of volunteering at a palliative care hospital? Go spend some time with people who are REALLY ill. Maybe then you will count your blessings that all you have are twitches and muscle aches.

Sincerely,

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Postby dwl on November 27th, 2003, 5:37 pm

There is a spectrum of peripheral nerve hyperexcitability. BFS is at one extreme (the mild end) and Isaac's syndrome is right at the other end (severe). They are both auto-immune - we already talked about voltage-gated potassium channel antibodies. This is not new information - there is a lot of stuff already published about this.

It doesn't sound to me as if you have Isaac's syndrome - as Pole says, you have no stiffness. Its other name is "stiff man syndrome". I suppose you could call BFS "Isaac's Syndrome Lite". No bad things happen to you with this condition.

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solarisle Thanks for letting us know what is happening

Postby dwpierce on November 27th, 2003, 6:59 pm

I am certainly here to help support other in their journey
SO this is a bfs board and you were offically given a bfs dx for yrs
Please keep use informed if your dx has changed!!!!

I am find this much better than " well now I have **** so I can no longer be part of this group so I will just disappear without letting others know"

I find as I look at posts to see if some is dealing with some of my Sx, I find a post in the archives and bam the poster disappears with out a follow up. Very frustrating for me.

I feel what you posted was great and a help to me

I am sorry to here you may have something more serious than bfs but as you said better than living wondering is it this or that or etc.


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Postby Sahti on November 28th, 2003, 2:47 am

Sorry Dale, but in my opinion, this information might just prove to be purtinent in the discovery of just how to deal with BFS. Solarisle, for God's sake, keep us updated! I've found through my own research that my BFS is directly linked to an auto-immun disease as well, and I'm going to keep you all updated.
If BFS can be diagnosed by a Neurologist, then it is indeed just as real as those you've mentioned with REAL illnesses.
"The most important things are the hardest to say, because words diminish them." - Stephen King
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Postby Dale on November 28th, 2003, 9:05 am

Good morning,

Perhaps you misunderstood my post.

The original "Subject" of this thread was "My BFS diagnosed as Autoimmune Disorder (Isaacs Disease)." In the actual message, Solarisle mentions that his Doctor is "fairly certain" and that "only time will tell" if he has this condition. I am rightly/wrongly interpreting that to mean that he has not been given an official diagnosis.

It's only my opinion, but I don't believe people should post this kinda stuff without an official diagnosis. For some of us here, it just stirs the pot. Some people start looking up more stuff on the internet & well, we all know what happens then - it only makes your BFS symptoms worse. My understanding is that this site is to support individuals with BFS.

If he does get an official diagnosis then fine, post that but remember, this is a site for people with BFS. There are lots of auto immune disorders: FM, diabetes, arthritis, etc. Again, this is a site for people with BFS.

One other thing "Sahti" - and I'm not trying to stir the pot here, BUT I find your comment "If BFS can be diagnosed by a Neurologist, then it is indeed just as real as those you've mentioned with REAL illnesses" hilarious. If you've ONLY been diagnosed with BFS, you should count your blessings. That's what the "B" in BFS stands for: BENIGN. Do you have any friends with diabetes? What about cancer? Take some time and visit a hospital. That's where you'll see REAL illnesses.

Sincerely,

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Postby dwl on November 28th, 2003, 10:50 am

Hey guys, let's all cool off a bit. BFS is an extremely mild benign version of Isaac's syndrome - we're talking about the same thing here. It does not become full-blown Isaac's syndrome, as evidenced by the Mayo Clinic paper. It's a nuisance rather than a serious illness. I'm guessing that your neuro was just trying to come up with some sort of explanation for you. He's probably wanting to cover his a$$ with expressions like "time will tell".

Most importantly, BFS is not something which turns into als/mnd which seems to be the commonest concern of users of this site.

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Postby Sahti on November 28th, 2003, 2:22 pm

Dale - Your opinion is taken into account. And in my opinion, Solarisle's possible cause to this tricky syndrome might help some of us too. As mentioned, there are many autoimmune diseases, most of which are harmless!
About the hospitals with REAL problems? I just have to laugh. Dale, I've been in and out of intensive care with Ulcerative Colitus and IBS needing blood transfusions from excessive hemorrhage in the colon (prompting acute anemia) since early 2001. It was fatal. Believe me, I've been there. And you saying "go take a look at people with Diabetes" also makes me laugh, because practically MY WHOLE FAMILY suffers from diabetes.
Now let's stop throwing stones and making unpleasant replies to people with hope, shall we?
"The most important things are the hardest to say, because words diminish them." - Stephen King
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Postby Dale on November 28th, 2003, 3:28 pm

Sahti - that's great. So you do agree with me that BFS is harmless. Absolutely no comparison to diabetes or ulcerative colitus. After all, BFS will not cause us to ever be in and out of intensive care. Psych ward maybe...

It's unfortunate that so many people on this site spend so much time & energy on such a harmless condition even after seeing Doctors and Specialists. My neuro told me to forget about the twitching and learn to manage my stress. I listened to his advice, BELIEVED his advice, acted on his advice (it was a lot of hard work) & my twitching and cramping has improved 99%.

I don't understand your comment about "people with hope"? What does hope have to do with this? If you've been diagnosed with BFS what are you hoping for? It's a benign condition. I fail to see how "Solarisle's possible cause to this tricky syndrome might help some of us too." If you are looking for help, re-read Arron's post on "BFS in a nutshell". Why waste time and energy looking for possible causes to a benign condition? Maybe that's why there seems to be no/very little formal research on BFS - because it's harmless!

BTW, my replies are not meant to be "hawty" ** oh, I see you've changed that, my replies are now "unpleasant". Well, I'll spell it out for you. If a poster is new here & is experiencing twitching/aches, I always advise them NOT to look stuff up on the internet, but to make an appointment with their doctor. If I notice that a regular poster (who has been given a BFS diagnosis) appears to be having an anxiety/panic attack, I always advise them to stay off the medical internet sites & try to reduce their stress. I hope that's clear.

Posting stuff about possible other conditions on this BB just gets people surfing the interent, getting all worked-up, thus making their benign condition worse.

And everyone lived happily ever after...

The end.


Sincerely,

Dale
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Postby dwpierce on November 28th, 2003, 3:58 pm

DWL

Thanks for the data

I found one thing after looking up the sx of isaacs and have not seen it in any other data.
The part about after one contracts a muscle it has a delayed release.
I have experenceed this at times though not very often. My lip at one time would stay up then drop a sec or 2 after I smiled weird but went away after a day or 2. I have been at this for 18 months.
Looking at this as bfs being a mild form works for me.


Thanks again for the research
Last edited by dwpierce on November 28th, 2003, 7:56 pm, edited 1 time in total.
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Postby dwl on November 28th, 2003, 7:16 pm

Dave,

I used to get exactly the same thing with my lip. It lasted for 6 months & nearly drove me nuts. The same thing now happens to my tongue.

My neuro confirmed the theory about there being a spectrum of peripheral nerve hyperexcitability.

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Postby SusanSid on November 29th, 2003, 2:44 am

Dale,
I cannot resist responding to your posting. First, this board shares many different possiblities as to the cause of BFS, from medication reactions to thyroid problems. Not everyone on this site has been give an "official diagnosis" by a doctor familiar with BFS either. Some have the diagnosis only due to the process of elimination.

I agree that we cannot be jumping from one worry to another trying to find out if we have something that someone else on this board has. I do find it helpful to get input from people who have had other causes for their symptoms as long as the main focus on this board remains on BFS and the claim in true. I also agree that there is more than enough worry on this board, and we need to be careful not to add unnecessary worry to people who are already anxious about their health status.

I also believe that BFS exists, and it's a benign condition....just a troubling and frustration one.

So, where am I going with this? I am compelled to respond to your posting to several of us that we should go to where people are really ill, I guess as a reality check, and to be more grateful for our "benign condition". Guess what, I work intensive care and see first hand what disease and tragedy can do to the human body and soul on a regular basis. I have not shared that on this board because I don't think it makes me any better than anyone else. Do I still worry about my own health at times? Of course I do. I wouldn't be human if I didn't. Guess my point is, don't assume that others that have concerns on this board are clueless, uncaring, self absorbed and out of touch. That certainly isn't the case for me, and I'm sure for countless others on this board.

Repectfully,
Sue
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