Symptoms Intensified

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Symptoms Intensified

Postby Heater on May 14th, 2004, 11:17 pm

During the last few weeks my twiching has increased substantially, becoming even more profuse. Also, intermittent pains became much more regular, with crampy/tight muscles, dull muscle aches and more electrical feeling nerve type pain.

I scheduled a visit with my neuro and he felt it odd that I was getting pain, other than cramping. He's ordered up some bloodwork for a CK check (the original bloodwork ordered by a GP included pretty much everything else but that), and I head back for a follow up June 7. For the time being he's prescribed Gabapentin (aka Neurontin in the US, I'm in Canada) for the fascics and pain, so I'm hoping to get some relief from various symptoms. He also asked questions about family history with arthritis so it leaves me wondering if there is not an autoimmune link. BTW, a bit more strength testing done, and all ok on that front.

He thinks I should get some relief from my symptoms with the Gabapentin and the pharmacist noted it should definitely help with pain. Has anybody else had any success with Neurontin?
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Postby Brian_B on May 15th, 2004, 2:45 am

I take neurontin. while it doesnt totally get rid of twitches I do think it suppresses them somewhat.
"The only thing necessary for evil to triumph is for good men to do nothing"
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Postby garym on May 15th, 2004, 10:52 am

I also take neurontin, and at one point I was taking 1800mg's/day. I currently only take one 300mg pill at bedtime. For me, the neurontin didn't help the fascics, but did help with pain. After weening myself down to one pill, I haven't noticed much of a difference in regards to pain. I hope that it helps you. It will also help with anxiety.

Good luck,
Gary
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hey

Postby dont on May 15th, 2004, 11:28 am

What is neurotin?
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Hi Dont

Postby KimE on May 15th, 2004, 12:53 pm

Neurontin is the drug of choice for most neuros. It wasn't made for nerve pain but I think epilepsy or seizures or something along those lines. Some claim it helps some get nothing from it.

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Hi Heater

Postby KimE on May 15th, 2004, 12:57 pm

Does he think it is some form of neuropathy? It may just be a flare and will calm done. Have you done anything to trigger it?

I fear autoimmune malfunctions are becoming epidemic.

I am convinced there is something in my environment. My neighbor two doors down has been having some problems. First they though she had lupus, now they think fibro?

She is like 55 or so but still how's that for a coincidence?

Good luck to you and keep us posted.

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Postby Heater on May 15th, 2004, 7:39 pm

Kim, I think he's a bit baffled right now, but he may suspect some neuropathic disorder, but then he doesn't consider symptoms other than twitching/cramping to be part of benign fasciculations.

I had thought that my seasonal hay fever may have been causing the flare up, if autoimmune response is indeed a factor in bfs. Funny thing is, my hay fever is less intense this year, much less than it has been since I developed it about 7 or 8 years ago.

Cheers,
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Postby TexasTom on May 18th, 2004, 5:10 pm

I have twitching 24/7 for years. Have alot of cramps in calfs & ankles. Started wearing support hose($15 pr), and things have improved. Dont know what to say about why. I am 63 today fyi.
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Postby Jenn311 on May 18th, 2004, 6:25 pm

Happy Birthday, Tex!

Jen :lol:
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Postby Heater on June 10th, 2004, 1:53 pm

I just returned from my follow up visit with my neuro, and the good news is, we still don't know what is causing my symptoms...bfs is still the diagnosis.

CK enzyme tests came back normal, and I also had a chest x-ray to check for the presence of any lymphatic problems, which I understand can cause neuromyotonia (aka BFS).

Only change is that I'm upping the dose of neurontin to 1800 mg a day, to see how that works out. I do seem to get some relief, most noticeable when I started on the drug. BTW, we discussed the future possibility of going off the drug, and you definitely need to work your dose down slowly.

Still of interest to my neuro is my family history of arthritis. He agrees it's possible all of this is auto-immune related, but we may never know.

I've resigned myself to living with this now, and although the twitching and especially the pains are not fun to live with, I now am certain that nothing serious is wrong, and I can keep on enjoying my family.

Cheers,
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Postby thetwitchkid on June 10th, 2004, 3:09 pm

Heater:

Can you shed any light on the chest x-ray and lymphatic angle? What was the doctor looking for?

Thanks
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Postby dwl on June 10th, 2004, 3:36 pm

He would be looking for a thymoma (google it!) which can co-exist with Isaac's syndrome/neuromyotonia. Probably just being very cautious.

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Postby garym on June 10th, 2004, 3:55 pm

Heater,

Just so you will no, I was taking 1800 mg's neurontin a day until about two months ago. When I was coming off, my pain really intensified for a few days, and then just returned to the normal everyday pain again. I have to say that i don't think the neurontin helped my twitching at all, but it did help with the pain. I hope it helps you, and let us know how you progress at the increased dosage.

Good to hear that you are still benign!

Gary
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Postby Heater on June 10th, 2004, 5:58 pm

thetwitchkid,

dwl is correct, partially. Lymphoma, Hodkin's disease is also linked to neuromyotonia, as are other types of tumors I understand. My neuro was being thorough, ruling out other possibilities.

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Postby Bradford on June 10th, 2004, 10:28 pm

Maybe I'm wrong, but the reasearch abstracts that I've read don't necessarily link neuromyotonia to any specifc neoplasm (s), but more like autoimmune disorders in general have association with a wide variety of neoplasms. Many which have been already named. However dwl is more than partially right because the largest percentage has in fact been thyoma in the articles that addressed this.

In the information that I was graciously given, out of all the patients observed as a control group the percentages of neoplasm that existed along with neuromyotonia symptoms was relative low so not everybody with neuromyotonia type symptoms is going to have an associated neoplasm and if they did, it would be thyoma based on the raw percentage numbers.

Who knows what our bodies are going rebel against next!
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