Medications, Treatments, & Diets

High Cholesterol

feeds@yuku.com (masanthony) — Fri, 23 Oct 2009 09:25:55 GMT

This is completely unrelated, but does anyone have this problem, what meds are you taking and what are the side effects? Also, Roberta sorry for your loss.

Anti-Anxiety Pills

feeds@yuku.com (sportschick12) — Mon, 21 Sep 2009 10:29:24 GMT

Being that after well over 7 months Len still has not found a job & we are looking at possible foreclosure, I tend to go into panic attacks. My neuro gave me Buspirone to calm me down. However the 7.5 mg even cut in half made my vertigo much worse & for the first time was accompanied my nausea.

How have you folks dealt w/ this medication? Understanding that my vestibular system is extremely sensitive to medications I was wondering if trying a 5mg pill & cut that in...

Speech therapy

feeds@yuku.com (mrsradar) — Fri, 28 Nov 2008 15:32:13 GMT

I went to a speech therapist for a couple of months and she has helped me tremendously. She helped me with the telephone by giving me a line " would you please hold on instill I get a piece of paper and a pen". Most people hang up if they do not know me. This helps but now my daughter text messages me if she needs to tell me something. My kids always ask for their dad.

The...

cramps

feeds@yuku.com (mrsradar) — Mon, 24 Nov 2008 15:35:06 GMT

Hello I was wondering if anyone else has muscle cramps in the legs. They seem to be happening more often now and I don't understand why.

Carol

B12 ( not B complex )

feeds@yuku.com (sportschick12) — Wed, 19 Nov 2008 18:12:56 GMT

Folks,

I found out I have osteoarthritis in both my knees & lower back. In the process of coming to this dx's some major bloodwork was done. What we found is that I have a vitamin B12 deficiency. She thought that by taking said vitamin it would decrease my fatigue.

Upon further research I found out that B12 deficiency not only leads to fatigue but can also lead to abnormal neurologic & psychiatric symptoms....

No gluten Diet

feeds@yuku.com (Bob354) — Sun, 24 Aug 2008 09:20:34 GMT

I'm trying to figure out how many people are on a no gluten or a low gluten diet? What are the benefits of this (I've been on it for about 3 weeks, and I believe that I have slightly less fatigue around late morning -- between 11 and 2 was a real struggle)? But I'm not sure if my fatigue-level has to do with the no gluten diet, or just eating better in general.

Are some folks on a low gluten versus a no gluten diet? The no gluten diet is not so bad, but I do miss my...

Peripheral neuropathy treatment

feeds@yuku.com (opca) — Fri, 13 Jun 2008 16:34:24 GMT

Hi all

I just came back fom getting some stitches out. Anyway I mentioned my peripheral neuropathy in my feet and legs. The doc said try Vitaman B6. So........I'm trying it and we'll see.

http://www.alyshia.com/OPCA/neuropathy.html

...

herbicides and OPCA?

feeds@yuku.com (jami abel) — Tue, 15 Jan 2008 12:26:51 GMT
I am a Veterans Service officer in Lake County, Ohio. I am looking for any information on exposure to herbicides and toxins in Vietnam and its effect on OPCA. I have a Veteran that is looking at getting this condition service connected and I need any evidence that shows that the disease could be related to his exposure to toxins in Vietnam.
Thank you for any feedback.
jabel@lakecountyohio.gov

Neurontin

feeds@yuku.com (sportschick12) — Tue, 04 Dec 2007 12:00:17 GMT
Has anyone tried the above medication for neuralgia? If so, could you tell me if it had a positive, negative or no affect?

Take Care,

Maria

Co-Q10

feeds@yuku.com (Bob354) — Wed, 04 Jul 2007 07:15:41 GMT
Aside from some of the meds people are taking or have tried, Co-Q10 pops up fairly consistently. My first neurologist at Johns Hopkins mentioned it also. But what seems to vary a lot is the dosage people are taking, the timing of this (ie. In the morning and at bedtime), and the frequency people are taking it (many(?) seem to be taking it twice a day).

Id like some feedback on the dosage/timing/frequency issues. Also, do you feel any benefits from Co-Q10? - Bob

Requip - a success story!

feeds@yuku.com (David) — Thu, 07 Dec 2006 20:37:25 GMT
Short history of my "buddy's (OPCA) progress:"

I first became aware of something wrong about 10 years ago. During the course of a routine physical exam, my family doctor was checking my reflexes, and I kicked him good and hard! He stepped back and tried again. Elbows, knees, and ankles were all affected. I had a CAT scan, then an MRI, but nothing showed up.

Eight years from my first significant symptoms (last March), I went to my neuro for my annual exam. My wife asked him how...

Progress with Experimental Treatment for Gluten Ataxia (#3)

feeds@yuku.com (bear1024) — Mon, 04 Dec 2006 18:07:28 GMT
This is an update on previous posts on Gluten Ataxia. Note, I am not a doctor nor is my wife.

My wife was diagnosed via MRI with cerebellar Ataxia in 2003. After numerous blood and genetic tests, all but one were negative, she was found to be positive for Gliadin (gluten) antibodies. She had blood tests and endoscopy for Celiac disease with negative results in July 2004. At this point in time she went on a gluten free diet based on the blood tests. She has been on this diet...

About muscle cramps...

feeds@yuku.com (Lindy Exel) — Mon, 04 Dec 2006 14:12:03 GMT
We all know that muscle cramps seem to go hand and hand with OPCA. My Neuro. surprised me when he told me that Quinine helped with that, but rather than paying for a presription I might try Club Soda. I looked at the ingredence (SP) and guess what.....Quinine is in there so I started drinking about 1/3 glass with my pills, for the day. It is like a lemon lime soda only very tart. It does help me a lot. Ask your doctor about it...Lindy

What is Ditropan?

feeds@yuku.com (opca) — Tue, 14 Nov 2006 03:45:05 GMT
Ditropan
Alyshia & Greg in Ontario, Canada

IVIg ( long)

feeds@yuku.com (poolgirl2) — Mon, 16 Oct 2006 16:40:32 GMT
This is for those who want to know about IVIg.( Intravenous Immune globulin). First of all, some background. I still do not have a firm diagnosis although I am receiving the IVIg based on the presumption that there is an autoimmune process going on. My severe symptoms probably started about 6 yrs ago with diffuse fasiculations, hyperreflexia and muscle cramping. I had episodes where my legs were discombobulated (sp?) but they would last a couple of weeks and then get better. In...

The drug gabapentin (GBP)

feeds@yuku.com (smetcalf) — Sun, 15 Oct 2006 10:17:57 GMT
Article in Spanish medical journal, Revista De Neurologia [Rev Neurol] 2005 Mar 1-15; Vol. 40 (5), pp. 285-8.

"Improvements in the symptoms of olivopontocerebellar atrophy with gabapentin" (Mejora sintomtica de la atrofia olivopontocerebelosa con gabapentina)

ABSTRACT:
Olivopontocerebellar atrophy (OPCA) is a degenerative disease of the nervous system (NS) which currently has no known cure. The neuronal depopulation it brings about produces a number of...

OPCA Medications

feeds@yuku.com (mdscroggins) — Fri, 13 Oct 2006 14:22:34 GMT
Hi,

I'm going to see my neurologist Monday afternoon for my annual appointment and among the things to ask him (I have a long list) is what medications he can prescribe for me to try. What do you folks find helpful? The only things I'm taking are 600+ mg of CoQ10, Vitamin E and 20 mg of baclofen at night mainly for minor night tremors I've had. Recently though I've felt very fatiqued, even upon waking in the morning and I hope he can presribe something to minimize this. I also find...

Gluten Sensitive Neuropathy

feeds@yuku.com (halsgluten) — Mon, 09 Oct 2006 19:21:03 GMT
Dr. Hadjivassiliou has completed another trial. He asked 35 patients with both idiopathic sensorimotor axonal neuropathy and circulating antigliadin antibodies* if they wanted to try the gluten free diet for 1 year. Those who did not want to try the diet became the control group (there never is a shortage of those who will not try the diet ).

After a year of the trial, those who tried the diet were better both clinically and subjectively and those who did not were worse both...

New Treatment for OPCA

feeds@yuku.com (Koofta) — Thu, 05 Oct 2006 11:38:49 GMT
I found on the internet a clinic that treats OPCA patients; it is called the Esperanza Research Foundation.

Please read the OPCA testimonial www.esperanzapeptide.net/...onials.php at the bottom of the page. I have spoke to this patients wife for an hour and we feel very confident that this is the first REAL treatment to help ones with OPCA.

Has anyone explored...

AMANTADINE

feeds@yuku.com (Joycie Richards) — Thu, 28 Sep 2006 17:22:27 GMT
Anyone heard anyhing about this drug?