Testing for CCSVI in Boston?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Testing for CCSVI in Boston?

Postby Selmahope » Wed Mar 10, 2010 9:16 am

Hi All-

I'm new to this forum. I"m 48. I've not been diagnosed with MS yet. I'm trapped in the is it MS or Lyme or? . Fibro 1998, Optic neurits 2006 with increasing neuro symptoms-MRI's normal 2006 and 2008. Currently housebound since trying my first abx/antifungal (flagy/diflcan for fungal treatment-1 week flagyl, 3 weeks diflucan at end of November). Went from working/living in November (from home with bad brain fog, increasing urination, disrupted sleep, some jerking, and twitching in legs)- to now non functional -it's almost like the drugs/and some herbs/sauna triggered an AI reaction? not sure-but now jerking all over, twitching all over, intense brain pressure, body weak /shaky including neck muscles,insomnia (2-3 hrs sleep on medication), head jerking , very dizzy, problems speaking, burning sensation up back/arms,sometimes swallowing difficulty, eye pain/pressure, and now for the first time numbness on left side that is not going away, left foot not picking up as high as right, balance gate. The head stuff combined with weak/jerky neckband insomnia is almost not bearable. Basically on the couch/floor home bound for past 3 months.
Similar experience but not to this degree 2 years ago on herbs- like an AI flare that laste 4 months-but was functional and recovered but not back to baseline. I feel like treatment has triggered two major MS type neuro flares if that makes sense? Doesn't feel like a "herx to me-since so severe/so long and explosion of new neuro symptoms that developed after stopping herb/drugs?

Anyway seeking a big name LLMD in NY-BUT terrified of aggressive treatment since just a few drugs put me in this state and I'm still on downward spiral with new symptoms weekly. This week so dizzy I can barely walk. All from just a few weeks of drugs at end of November.I have been chemically sensitive for past 20 years and always sensitive to drugs.

Have an appointment for neuro and MRI . no contrast die since I feel like I had reaction to contrast die (first time I had major jerking at night) . I've always been senstive to everything. Scared about getting lumbar punctar. Is that really necessary? I'm so sick now don't want any extra stress on the body.

Sorry for long winded story-

Pursuing all options given how non functional I now am so I want to pursue getting evaluated for CCSVI.

Does anyone know of a location to get evaluated or how to go about it int the Boston area? I also see on Sammy Jo's site that there is facility listed in Albany NY? Would prefer Boston since so sick since Albany is much farther for me. With the highest rates of MS in New England and major medical instutions/research in Boston I would think some facility in Boston would be offering this?

(on LDN very low dose-1.0M since sleep is already bad-and got new symptom like permanent numbness 2 weeks after starting LDN)Also raised bed 3" this week.

Any advice/comments welcome. Trying to climb out of hell. :(
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Postby whyRwehere » Wed Mar 10, 2010 9:47 am

All I can say is, I feel really badly for you. My husband is also quite sensitive to drugs....so he avoids them as much as possible. I don't know why Boston won't wake up to this...I tried to interest the Globe in the story and never heard back. Tried 2 or 3 times. Read yesterday that Phyl (of Bernie and Phyl fame) has MS....asked the journalist to fwd some links, and they said thank you for them, so maybe with that couple involved, we might hear about something happening. I hope.
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Postby kc » Wed Mar 10, 2010 10:45 am

selmahope,

My heart goes out to you. I am dx'd with ms for 14 yrs and did go thru all that.
I am on ldn 2.0mg. Started this in 04. Also on high dose vitamin d, that really has helped along with the inclined bed therapy. Also Krill oil which helps to thin the blood has done wonders for me.
I realize I am not answering your question because honestly I do not know if anyone if Boston is doing ccsvi scanning/treatment.
There is a doctor in NYC who is doing the procedure. Wheelchair Kamikaze had it done today.
I am also very sensitive to medications, herbs etc. I did a 3 year protocol of combined antibiotics and I just got worse, I finally had to admit to myself it was not helping. Some of my "die offs" were like dementors having a party.

Hopefully someone here will have some advice 4 u.

kc :P
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Albany?

Postby Selmahope » Wed Mar 10, 2010 10:56 am

Hi KC-

So you have had all of my symptoms including the neck weakness/jerking head pressure head stuff -did that part get better?

Did you ever take steroids? I"m fearful of the whole abx making me worse- the whole lyme dilemma is so confusing. I have seen some people get better, but I wonder how many get worse. Who did you see for LLMD?



Since you are in Syracruse have you seen the info posted Sammy Jo's site regarding someone in Albany to do testing?
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Postby kc » Wed Mar 10, 2010 1:17 pm

selma,

Yes, I have had the neck weakness with L'hermittes. I have had headaches where I would chop off a finger to make the pain stop, Although I still get headaches, the intensity is much less. Sounds like u have a lot of spasticity. How is the inclined bed therapy going?

kc
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IBT

Postby Selmahope » Wed Mar 10, 2010 3:29 pm

Just started 3" (king size bed) Sunday night and today/middle of the night I became so dizzy I can barely walk and dizzy in bed. Seems like last 3 months every day is a worse symptom than the next. Been dizzy but not like this. So not sure if its helping or hurting. Also left side more numb. But arms not falling asleep as much.
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jerking

Postby Selmahope » Thu Mar 11, 2010 7:50 am

Is head jerking, hand jerking, foot jerks ( I also have twitching every where through my body-even my lip twitches!) The head jerking is th worst along with the weak neck/head pressure/eye pressure, dizzy- the head stuff is the worst part

I have no fatigue- I have opposite problem- system is overdrive on high alert-difficult relaxing--

Also burning up my back and arms.

Are these MS symptoms? Trying to figure out the whole MS versus Lyme question. I don't seem like the classic MS case. But, I know MS presents itself in so many ways.
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Inclined bed

Postby AndrewKFletcher » Sat Mar 20, 2010 4:08 am

Have you raised your bed further yet?
Find us on Facebook.com/InclinedBedTherapy
IBT website: http://inclinedbedtherapy.com
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