Auto-immune question

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

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Postby Pasics Pete on January 4th, 2005, 1:36 pm

Interesting, indeed. While being tested for various autoimmune disorders (after a positive ANA test) my Rheumy informed me that he found a "low level" of thyroid antibodies in my blood. Standard thyroid tests, however, have failed to show any abnormalities so no treatment was recommended.
I’ve also noticed that my body temperature is consistently “below normal” – (depending upon the time of day, anywhere from 96.8 to 98.3).
For many of us, I am convinced that this BFS/CFS/Whatever is related to immune system issues.
Best,
-Pete
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Postby stevepaul on January 4th, 2005, 4:58 pm

Its interesting to note that the Monzani EMGs all showed double and multiple discharges which is the same pattern as was used to differentiate the NMT and CFS PNH varients in Hart et al study. It would be interesting to know just how many people on this forum had either the single discharges that equates to the BFS/CFS PNH varient, or the doublet/tripplet patern indicating the NMT varient, show up on their EMGs. Does anyone know which pattern showed up on their tests?

Like Dave y (thanks, but no appology needed) I find it strange that more people are not diagnosed with NMT in accordance with the Hart study. Could it be that a lot of neuros are not aware of the subtle differences?
I also find it strange that no one seems to have been diagnosed with the Cramp fasciculation varient, also why aren't anti-convulsant combinations being prescribed to anyone on the forum.

Steve
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Postby garym on January 4th, 2005, 5:38 pm

Steve,

My emg showed only single discharges and my neuro said the pains associated with my BFS could be caused by benign cramp fasciculation syndrome. So i didn't really get a dx of BCFS, but it was mentioned as a possibility. He also said based on the single discharges that some of the other possibilities such as Isaac's weren't really relevant. He mentioned the difference in emg findings.

Take care,

Gary
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Postby PDR on January 5th, 2005, 9:56 am

During my second of three emgs, the neuro mentioned a "doublet" in my left shoulder. A single doublet....said 10% of normals have it. His final report only mentioned one Fascic in the left thigh.

It was the third neuro and emg that show a single Fascic in the left forearm. He was the one who initiated the Neurontin. The second said take Magnesium. ( I take 1000 with 1200 calcium daily )

I was up to 900mg a day, but was gaining weight and consitpated. Tappered off and use 300mg as needed at bedtime. Also Flexeril as needed. ( as well as Mortrin - as needed )

I've read on other sites you have to get way up into dosage, like 1800 to 3600mg of Neurontin to have an effect on Fascics. WOW---that is Psyc levels...that is beyond treating Post Herpetic Neuralgia....

The Neuro did say we have a ways to go on the drug. He initially started me on 100mg Three times a day.....

Don't know.....these things are weird.....they come and go....sometimes I shake, sometimes I don't. Sometimes I burn, sometimes I don't, sometimes I feel like my entire body will cramp, sometimes it dosen't, sometime I feel like I have bad arthritis, sometimes I don't......but I do TWITCH constantly.... :lol:

( Worse after exercise 8) )
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Postby garym on January 5th, 2005, 11:04 am

Paul,

I was up to 1800 mg's/day of neurontin, and it didn't help the twitching at all. It did however help me to gain 50 lbs that I'm having to lose now. The hunger was unending while on neurontin.

Take care,

Gary
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Postby PDR on January 5th, 2005, 12:07 pm

Gary

Ocuh on the 50 lbs....dude, that is alot of weight.....good luch getting rid of it.....

Neurontin is good to "sedate"......but not worth the "weight"...... :lol:

---------------------

On another note.......

EMGs.....interesting how my Calfs "go" 24/7 and none of three emgs showed anything......you can see the skin do its thing...but never did a Fasic show in the Calf on an emg......I think it is becaue I was lying down.....I observe that while lying down and there is pressure on the calf...they are "quite".....however, my tricept, forearm and thigh were never "against" the table...thus making them to be able to be picked up.....only my hypothosis....

--------------------

One more thing........has ANYONE had the constant feeling of "ants"/"tingling" in the calfs like you just jumped off the back of a pick-up truck and landed on your feet with no visible skin movement? :?


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Postby stevepaul on January 5th, 2005, 2:24 pm

Hi Gary and Paul.

I was given Carbamezapine, Sodium Valporate, and Lamotrigine all to no effect. The first combo of Carbamezapine and Lamotrigine also had no effect. I was then prescribed Lamotrigine and Gabapentin (Neurontin) 400 and 900mg respectively and this combo has really quietened down the symptoms, especially the morning period which was allways the worst and I haven't experienced any side effects.

Regards Steve.
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Postby PDR on January 5th, 2005, 4:19 pm

Steve:

Gaba 300 three times a day

What was the dosing on the 400.....200 twice daily?

Thanks...... :P

Paul

-----

PS what about my Pick-up truck question, do you have that sensation :!:
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Postby stevepaul on January 5th, 2005, 5:27 pm

Paul
You are right, Gabapentin 300mg x 3 a day
Lamotrigine 200mg x 2 a day.

I didn't notice any difference in symptoms until I reached the full 900mg of the Gabapentin and then the improvment kicked in the following morning. Prior to that I would take a combo of Diazapam and painkiller 2/3 times a week in order to give myself a break from the painfull mornings, but I've only had to use this combo 3 times in the last 3 months.

I used to experience the ant / tingling sensation that you mention, but it was only sporadic in my calves/ thighs. The nearest thing to it that I get now is like a low grade burning sensation mainly in my thighs.

Regards Steve.
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Postby Stephanie on January 5th, 2005, 7:36 pm

Paul-I've had the ants/tingling thing too, not just on my calves but also fore arms & neck/shoulder.
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Postby PDR on January 6th, 2005, 8:28 am

Steve:

Did you "titrate" up to 200 mgs.

I've read you have to start at low doses of the Lamotrigine and work up to that amount.

Thanks to you and Stephanine for the reassurance.

ANOTHER QUESTION.....

When I walk from the parking lot to my office I carry my "bag" of things. My hand and forearm get crampy, but no weakness.....same if I alternate to the other side. My strength is fine...I lift lightly during workouts and my endurance if fine I spinn and run for 60 or so minutes.....

The hands and forearms thing has been going for awhile.....I can remember back in 2001 while washing the car with a high pressure hose my hand would get crampy......now I "FIXATE" and twitch :wink:

THANKS TO ALL!!!! :lol:
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Postby stevepaul on January 6th, 2005, 12:57 pm

Paul

Right again. I started at 100mg taken at night for a month. Then another 100mg in a morning for a month, then increased the night time dose to 200mg for a month, then increased the morning dose by 100mg. So it took 3 months to get up to 400mg.

With the gabapentin I started at 300mg at night and increased the dose by 300mg a week to get to the 900mg so I now take 300mg every 8 hours.

I'm sorry but I can't help you with your other question as my symptoms have allways been confined to my thighs and calves.

Regards Steve.
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Postby Stephanie on January 6th, 2005, 9:55 pm

Don't worry about the cramping. My neuro said it's common in bfs. I think that these things happen to most people but unlike us, they are able to blow it off.
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Postby PDR on January 7th, 2005, 9:32 am

Thanks Steph (if I may)...

Perhaps I've had this longer than 10/11 2003......and I finaly reached a boiling point and "POP".....too much "information" and overload.....question is how to get ride of it (if possible :evil: )

I can also remember having the ants/tingly feeling in the calfs before the "bow-up" and perhaps seeing a movement in the calf and just figured it was do to exercise......

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for Stevepaul re Hart & autoimmune tests

Postby Ish on February 14th, 2005, 5:50 pm

Stevepaul,

I'd love to know just what tests Dr. Hart (or I guess you 'Mr' consultants over there?) would have us curious BFS patients recommend to our Neuros -- e.g. in order to see whether we have any signs of VGKC antibodies, or whatever. If he orders more for you be sure to get the names for us!

(though as a classic single pulse BFSer I guess the changes of VGKC antibodies are lower in my case than in yours. Still I'd like to find out.)

-ish
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for Stevepaul re Hart & autoimmune tests

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