Even rational Docs get worried

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Postby Mendota on February 10th, 2006, 1:01 pm

I remember the study where medical people were over-represented because they were aware of the implications of twitching. I think that the medical community is going to have to eventually revise some things now that the internet has made us ALL aware of those same implications. In other words, I think as more people become worried about twitching, there is just going to be a lot more of them going to doctors with their twitching but no familar diseases.
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Postby CJH on February 10th, 2006, 4:13 pm

Thanks love the quote! One of my top ten films. Casablanca at the top.
You are probably right. Better get lecturing my fellows and colleagues. Even though I specialise in gastro I am also a general physician and see many patients after emeregency admission with lots of different neuro signs. Both of my senior colleagues and I had not heard of this condition so go easy on docs. The textbooks are large and our memories are as fallible as the next persons. If you have ever passed an exam of a degree how much of the knowledge did you retain one year later let alone 18 (I qualified in 1987)

Cheers again

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Postby wjjw on February 10th, 2006, 5:50 pm

Was this in the medical textbooks 18 years ago? It doesn’t seem to be well understood. It took Stevepaul 5 years (?) to get a diagnosis according to his website.

I saw that the Hart paper has a list of “associated autoimmune disorders” with PNH, and celiac disease is one of them. I tested positive (no GI symptoms) and I’m going to have a biopsy. I did a little “Internet research” on celiac disease and there seems to be many different views in the medical community, even with that autoimmune disorder. Some say that neurological symptoms or muscle aches/crams can be a presenting symptom of celiac before GI symptoms, and others (like the GI specialist that I saw) say that you would have to have really bad GI symptoms and malabsorption for that to occur. Then again, he said “there’s a lot we don’t know.”

I briefly checked out a celiac forum (yeah, just what I need, another health related website) and I saw that many had muscle aches and cramps, even though they were on gluten free diets and had their GI symptoms under control. There was even a few body wide twitchers (out of the 5000 members). Maybe they had BFS too.
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Postby stevepaul on February 11th, 2006, 8:48 am

For the first two years I didn't really push for a diagnosis although I did see a rheumatologist in the first few months who hadn't a clue what was going on. My problem was that I was completely oblivious to the twitches, so obviously didn't mention them as a symptom. Perhaps if I had been aware of them then I might have received a diagnosis sooner.

I have been informed that GP's might see a person with the symptoms possibly every two years but would not necessarily recognise them. Also, BFS does not often make it into the hospitals here in the UK. There had been plans to investigate a large group of people with BFS but this didn't happen due to funding.

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Coeliac disease

Postby CJH on February 11th, 2006, 11:55 am

As a GI doc I see lots of coeliac many of which have no GI symptoms. A study from Sheffield England from the early 90's showed that up to a third of patients leaving neuroclincs without a diagnosis despite tests had coeliac so that could be a real factor for some. In europe the awareness of coeliac is much greater. I have been to lectures at the American conferences where they appear to be discovering the disease and in particular its widespeard features for the first time. Latest estimate in the Uk put the prevalence at near 1:100 with many undiagnosed. I have been considering doing the antibody tests myself.

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Postby wjjw on February 11th, 2006, 12:22 pm

Thanks, very interesting. I think this link might be what you are referring to. It mentions Parkinson’s, which my mother also has, and she has celiac disease. She never had GI symptoms either. I'm also going to an immunologist in March.
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Postby Schuey on February 11th, 2006, 3:02 pm

I have done some reading on coeliac disease and there is quite a lot of research out there connecting neurological diseases with coeliac disease.

I am particularly interested as I do have GI symptoms and have had bowel surgery. Wonder if there is a connection? Never been tested for coeliac, but I have just arrnged this in light of what I have read recently.

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coeliac or celiac

Postby CJH on February 12th, 2006, 4:34 am

This is a common condition with an often long latent period. The patients I have seen complain of tiredness (but I see very few people who aren;t and when they do I suspect them of either drug misuse or over active thyroid !!!! - joking btw). Many have achy muscles but one of the features of celiac is malabsorption of nutrients ie calcium so the muslces problems are not surprising. I am due a second opinion on my symptoms in a couple of weeks from a neuro who has interest in BFS I will ask about any association with coeliac then.

Certainly anyone with IBS should be tested as a friend of mine looked at community patients with IBS and found that 1:20 had coeliac!!! So it is at least worth an antibody test, not perfect but available easily, most UK general practionners should be able to do this at your request.

Also if there has been unexplained anaemia or other forms of malabsorption ie of vitamin B12 which I see mentioned in some of the other posts.

Perhaps the best thing about coeliac is seeing the response to diet over the next twelve months as people not only return to health but often get a real boost. If my twitches and aches were to respond as well that would be brilliant

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Postby ryanbabs on February 13th, 2006, 1:34 pm

Could malabsorption be missed in blood tests? What test is used for Celiac?

I also read this article about Parkinson's and H. Pylori a few days ago:

http://brain.hastypastry.net/forums/sho ... p?t=119340

I have had major stomach promblems in the past (10 years ago), including a major stomach operation.
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Postby klag on February 13th, 2006, 10:19 pm

CJH hopefully someone in your position can start advocating to the medical feild of this condition or maybe u can write a medical report to the medical feild of your experiences with bFS and how it impacts the liives of people. I think pharma companies can make there money on this while at least aiding in the releif of people with this. they just need to invest a little as it seems there are enough of us out here. this topic has come up on many debates. i'm not trying to sound bad or wrong in this post, just was curious of your thoughts.
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Postby CJH on February 14th, 2006, 4:56 am

I do intend to write about my experiences as a Doc with BFS to highlight how a) being a terrified patient changes your perspective and b) to publicise BFS are related conditions. My slight concern is I still feel like my symptoms are changing and I am waiting for another neuro consultant. My last neuro has emigrated (I hope not due to the prospect of seeing me!!!).

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Celiac Desease

Postby Slavin Balen on February 14th, 2006, 5:08 am

My Gastroenterologist ordered AGA test (Antigliadin Antibodies) which I haven't done yet. Last year in July I done EMA test (Antiendomysium Antibodies) which became negative. EMA and AGA are standard tests for Celiac Desease. I have a friend with CD. She has noticed first symptoms in her 40-ties. It was very disturbing experience for her. She has not any twitches, cramps or something from our (BFS) list. She was under great stress then.
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Postby wjjw on February 14th, 2006, 7:57 am

ryanbabs wrote:What test is used for Celiac?

The most specific blood test is tTG (Tissue Transglutaminase) level. If that's positive, a biopsy is used to confirm.
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Postby klag on February 14th, 2006, 8:48 am

right on cjh it will be interesting to here about that. hopefully u post what it is on here when u do this.
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Postby dmknycity on February 15th, 2006, 1:39 pm

Hi CJH, "A little knowledge is a dangerous thing" - hence, twitching Docs are keeping the neurologists of the world in business. "Ignorance is bliss" - hence, there are so many twitchers out there who just assume it's normal and never give it a thought. I am not a Doc but also not ignorant. I had a history of periodic twitches and never really gave it a thought except when it kept me from getting a good night's sleep - rare and usually when over tired. About 3 1/2 months ago, right after having had 5 stents inserted into my heart, the twitches started and became relentless. After a few days, I started doing the research and I'm sure you can figure out the rest. Today, still twitching but back to full workouts and seemingly quite healthy (for a 65 yr old). Again, I am not a Doc but can tell you this with total certainty - twitches without accompanying muscle weakness or atrophy are NEVER ALS. Try and relax and if the twitches are with you for a while, remember there are much worse things. Trouble sleeping - Ambien CR. Cheers, DMK in New York
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