Auto-immune question

Information about how to manage or reduce the severity of BFS symptoms

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Postby kim on December 10th, 2004, 2:45 pm

Hi!

My family history indicates several autoimmune disorders. My Mom,Aunt and I have thyroid issues. Another Aunt with Fibro and a cousin with arthritis.

My ANA levels were tested in 2002 and I was also tested for SLE at that time. Negative on Lupus, but ANA at 1:680! I believe the test goes in incremants that double (i.e. 1:60 then 1:120 then 1:340....) I also know that these levels can fluctuate up or down. My doctors told me people can be born with and live with elevated ANA levels and never encounter a problem.

Kim
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Re: VGKC antibodies and autoimmune disorders

Postby Davey on December 10th, 2004, 4:23 pm

Steve (and others) -

Personally, I think Hart et al. have pretty much "hit the nail on the head" by suggesting autoimmune disorders as the likely cause. It would be nice, though, to see more supporting evidence and independent confirmation. You are fortunate to have a neuro "on the cutting edge."

If my memory serves me, didn't you mention that you were on neurontin and lamotrigine? Has Dr. Hart ever prescribed immune system modulators for your BFS?

Incidently, I just came from my neuro. He told me that my TSH is 10.13, which indicates that I am still hypothyroid, even though I'm already on 50 mcg of levothroid qd. I'm moving up to 75 mcg qd now. My family has a history of hypothyroidism. My mother and grandmother both have/had it. Hypothyroidism is more common in women, but I seem to have inherited the "bad genes."

On a different note, I gave my neurologist a copy of Dr. Hart's article -- he had never seen it before! As a geophysicist, I find it hard to keep up with the journals in my field. I imagine it is the same for doctors as well, and since our malady isn't particularly common (or deadly), it gets pushed to the side. I guess it is up to us to be educated patients. It is a little discomforting, though, when one seems to have a more "up to date" understanding of BFS than one's own neurologist!
Cheers,

Dave

Proud sufferer of Cramp-Fasciculation Syndrome since June 2001.

"Do not fear death tomorrow so much that you forget to live today."
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immune disorders

Postby stevepaul on December 10th, 2004, 6:19 pm

Hi Dave

I'm with you on the educated line of thinking. Its up to us to make the neuros aware of the info out there. We are fortunate in so much as. 3 of the neuros, I Hart, J Newsome Davis and P Maddison involved in the studies are prety much evenly spread throughout the UK. so no matter where you live its only a few hours drive to see one of them. I Hart was registrar to the neuro who David (DWL) was diagnosed by.

This autoimmune association goes back long way with different neuros looking into it. Along with VGKC antibodies, other supporting evidence from another Hart, Newsome-Davis paper, quote "Plasma exchange often produces marked short term clinical improvements accompanied by a reduction in EMG activity and is indicated in patients with debilitating symptoms that fail to respond to first line drugs. Experience suggests that intravenous immunoglobulin can be helpful, despite reports that it worsened PNH in one patient and was less efective than plasma exchange in another. These immune therapies can also be used in difficult VGKC antibody negative patients to help establish whether their PNH is autoimmune. In addition, a positive response to these therapies along with VGKC antibody status may help predict which patients would benefit from long term oral immunosuppression. There are no good trials of oral immunosuppression and these therapies need to be better evaluated before firm guidelines can be established. However, combinations of prednisolone and azathioprine or methotrexate have helped some patients"

I'm on neurontin and lamotrigine at the moment and these have had the most positive effect of all the meds I've had so far. Other people should tell their neuros about these combinations. Hart has mentioned steriods but these would only be tried after I'd exhausted all the anti-epilepsy meds without showing a great deal of improvment.

My mother had thyroid problems and I am showing the antibodies but as yet I have no symptoms

Regards Steve.
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Postby amy_twitch on December 10th, 2004, 9:28 pm

When the BFS mess started for me over a year ago, my ANA levels came back positive at 1:320. Like Kim, I was sent to the rheumatologist for lupus and connective tissue disease screening--but they came up with 'nothing'

My last ANA test, about four months ago was down to 1:80. I have been feeling much better with very little twitching for the past few months. Next time I see my doc (don't have an appt at this time), I will ask for a follow up test to get a current reading.

Unfortunately, ANA is one of those 'hard to determine' screening tests. It can mean so many things for many different people.

All along, my doctors have said my symptoms are all stress and anxiety related--but it's really hard to have a blood test reading come back positive and try to convince yourself that it's 'nothing'. That's why I'm really curious about all this autoimmune discussion too.

-Amy
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Steroids for autoimmune

Postby Davey on December 10th, 2004, 9:35 pm

Steve -

I've been consulting my brother who is a family practice physician by training, and Chief of Medical Staff at Charleston Air Force Base here in the U.S. I send him all the articles I find and get his opinions. He thinks my doctors aren't running enough tests. However, he is at a military hospital and doesn't have to worry about HMOs/managed care!

I mentioned prednisone and other steroids, which he quickly cautioned me about. He says that the side effects are awful and when you go off of them, there is a nasty rebound effect. He said that there are a lot of new medications for immune system modulation. He wasn't specific, but I'll pick his brain for them.

You're lucky that you have so many good neuros. One of the problems here with HMOs/managed care is that you don't get much of a choice by the insurance companies. C'est la vie!
Cheers,

Dave

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Immunosuppression

Postby stevepaul on December 11th, 2004, 8:56 am

Hi Dave

I've just been looking at the Hart paper. (I bet people are getting sick of this name) In the margin next to the bit where he says, There are no good trials of immunosuppression, etc. he's written something that looks like edit or update. So maybe there is some new info available.

Amy. Nice to hear your enjoying this discussion. Like DWL has said, it is more interesting.

regards Steve.
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Postby dave y on December 29th, 2004, 7:31 pm

I guess I'm not clear on the significance of this paper. It is very interesting but I wonder (and sorry steve if it irks you that I am once again in your sandbox), can anyone explain the 2:1 ratio of PNH dx's to BFS dx's? (in the absence of MND dx that is). Seems very high for something I've never heard of. Since the discharges are detected on EMG why is this not being dx'd at a 2:1 ratio by other neuros? Am I reading it right that perhaps twice as many people presenting with twitching have PNH as opposed to BFS?
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Postby stevepaul on December 30th, 2004, 6:58 am

Re sandbox.

May I sugest that if you don't like my "sandbox" then why not keep out of it and direct your questions at others who may be in a better position to answer them. I am sorry if my replies to you have seemed child like. If you want to make personal comments about me, and you are welcome to do so, then please have the common decency to do it through a pm and keep snide remarks off the board as I doubt other people are particulary interested, preffering constructive thoughts instead.

Unlike yourself I did not join this forum looking for answers, I had all the answers I need, and considering the fact that I don't have BFS maybe I don't belong here at all, but it was my intention to put forward all the information I have gathered from my own homework and what has been given to me by various sources. I will continue to post any new information that I receive and ask I Hart questions that people would like answering, if they so request, in the hope of helping people with a PNH related disorder gain a better understanding about it and put their mind at rest.

What significance you might put on these replies will be entirely down to you.

Steve.
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Postby dave y on December 30th, 2004, 1:48 pm

Steve, perhaps you'll remember you were the first to get "snide" in response to my sincere questions some weeks ago. If you post this stuff to invite discussion, don't expect to reign supreme over the content of the posts.

Regardless, and all BS aside, I am still (more than) curious about this 2:1 PNH to BFS ratio. I've never heard of anything like it, it's startling. If these are two diseases differentiated by EMG why aren't there many more PNH dx's than BFS? (that's an honest question, not a provocation).
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Postby stevepaul on December 30th, 2004, 4:19 pm

I don't know why, so I can't answer your question. Maybe someone else can put forward their thoughts on this difference.
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Postby dave y on December 31st, 2004, 8:58 pm

Thanks Steve, sorry about the sandbox comment.

I'm not sure if this ties into anything, but with all the earlier posts about thyroid (I'm hypothyroid myself) and, was there calcium talk earlier too? Anyway, here's an interesting study showing what I think is how you can have subclinical thyroid condition (meaning tests come back normal) still causing neuromucular problems. Mentions ionized calcium in it too. Interesting that it can be picked up on EMG too.


Neuromuscular symptoms and dysfunction in subclinical hypothyroid patients: beneficial effect of L-T4 replacement therapy.

Monzani F, Caraccio N, Del Guerra P, Casolaro A, Ferrannini E.

Department of Internal Medicine, University of Pisa School of Medicine, Pisa, Italy.

DESIGN, PATIENTS AND MEASUREMENTS: The presence of neuromuscular symptoms was ascertained by questionnaire in 33 consecutive patients with subclinical hypothyroidism (sHT) as compared to 44 age- and sex-matched controls. Blood was sampled for PTH, magnesium, phosphate, and total and ionized calcium determination. Patients reporting three or more symptoms were also studied by surface electromyography (sEMG). The study was repeated following a six-month L-T4 course. RESULTS: Neuromuscular symptoms were significantly more frequent in patients than in controls (P = 0. 0001), and correlated with TSH values (r = 0.52; P = 0.0001). Among patients showing three or more symptoms (n = 11), sEMG documented the presence of repetitive discharges in 8 patients. L-T4 therapy led to a significant improvement of symptoms (P = 0.0001); persistent repetitive discharges were no longer observed. Total and ionized calcium values, always within the normal limits, were significantly lower in patients than controls (P < 0.0001). An inverse relationship was observed between ionized calcium and: TSH values (r = -0.69, P = 0.0001); the number of neuromuscular symptoms (r = -0.53, P = 0.0001). L-T4 replacement induced a significant increase in both total and ionized calcium levels (P < 0.01 and P < 0.0001, respectively). CONCLUSIONS: Neuromuscular symptoms and dysfunction are rather common in subclinical hypothyroidism, and may be associated with abnormalities in serum calcium balance and surface electromyography. The ability of L-T4 treatment to reverse all these changes suggests that subclinical hypothyroidism patients may require early therapy not only to prevent progression to frank hypothyroidism, but also to improve their neuromuscular dysfunction.
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Great article

Postby Davey on January 3rd, 2005, 1:32 pm

Dave y -

The Monzani article is very interesting. It clearly indicates that neuromuscular syndromes like BFS can be caused by hypothyroidism. One nice thing about this is that hypothyroidism is easily treated.

I am hypothyroid, and recently after my first visit to a neurologist, he increased my thyroid meds to 75 mcg qd since my TSH level was 10.13. I suspect that he suspects that the thyroid is responsible for my BFS. Even though TSH levels from 3 - 5 are considered normal, many studies suggest that the target should be around 1. My brother is also a doctor, and is chief of medicine at Charleston AFB hospital. He also thinks it is related to my hypothroidism, but feels that my neuro has me on too low a dose. He says that the rule of thumb is 1.7 mcg per kg of weight, which would require a dosage for me of 150 mcg qd. So right now, I am taking half the dosage I probably should be taking, which might explain why I continue to have BFS symptoms.

I downloaded the Monzani article. You can download it here.

They don't mention fasciculation by name, but use different terms like fibrillations and repetitive discharges and duplet and multiplet discharges in muscles as a form of hyperexcitability. They also mention cramping and fatigue.

Hypothyroidism runs in my family, my grandmother and mother both having it. Anyone who is hypothyroid should be on thyroid medication, since hypothyroidism causes coronary heart disease. So if hypothyroidism is the cause of your BFS, the medication will also help to prevent heart disease, hypertension and stroke.

Incidently, my grandmother had heart disease, hypertension and strokes and it ultimately caused her death. My mother is 74 and has been on thyroid meds for a long time. Although she has hypertension, she hasn't had a major problem (knock on wood!).
Cheers,

Dave

Proud sufferer of Cramp-Fasciculation Syndrome since June 2001.

"Do not fear death tomorrow so much that you forget to live today."
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Postby thetwitchkid on January 3rd, 2005, 2:13 pm

Davey:

The link didn't work. Can you repost it.

Thanks
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Try it now ...

Postby Davey on January 3rd, 2005, 2:52 pm

I had an extra space in the filename. Sorry about that!

:-)
Cheers,

Dave

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Postby dave y on January 4th, 2005, 12:33 pm

Davey,

I'm hypothyroid too. Back to that in a second. What I found particularly interesting about study that was the word "subclinical." Presumably, all of the people in this study would have been screened with a healthy thyroid, yet it was their thyroid causing the symptoms. And though it's not mentioned on the study, thyroid problems are known to cause twitching. It just makes me wonder how many BFS cases are subclinical hypothyroid.

My hypothyroidism is believed to be due to a hypopituitary condition (no known cause, happened after a bout with CFS and EBV). My first endochrinologist said he likes to keep my TSH between 0.5 and 1.1. I believe I do feel better at those levels, but I haven't felt like i did before getting sick with CFS six years ago. Do you have any experience with adding T3? I'm going to talk to my endochrinologist here in Italy about the possibility of adding that.
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