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Opinions, advice etc...

Yesterday I had my first appointment with an MS Specialist. The neurologist I was originally sent to was less than knowledgeable about MS, so it was necessary.

The original neurologist (11/06) suggested Copaxone, and a possible MRI in a year. Her opinion of steriods was that I shouldn't take them unless I have a debilitating attack. I have been taking Copaxone since and waiting for the specialist appointment.

The specialist after reviewing my MRI confirmed ...
Read more : Opinions, advice etc... | Views : 1705 | Replies : 5 | Forum : General Discussion

Question about MRIs

I was dx 2 years ago after brain MRI, cervical spine MRI, and spinal tap. Since then, I have been on Rebif therapy (and doing well!) I asked my neuro if I should have another MRI and she said that I really didn't need one since the dx was conclusive and since lesions come and go, it really would just muddy the waters.

I'd like to know what others have experienced in terms of follow ...
Read more : Question about MRIs | Views : 2039 | Replies : 5 | Forum : General Discussion


I accidentally hijacked the previous thread with this posting--hit the wrong button. Please forgive me, I intended a new topic:

After looking through the forums without finding the perfect fit, I am putting this new (to me, anyway) vocabulary word here. The subject affects the daily life of so many of us!

From a recent AARP publication came this information:

20 million Americans have blenophobia--or fear of needles--according to a recent study.

Shall we make ...
Read more : Blenophobia--Whoops! | Views : 1858 | Replies : 2 | Forum : Daily Life

Voice Your Support for "Temporary" SSDI Benefit

As of noon today, nearly 1,200 people have signed the SSA Disability "Chronic Illness" Insurance Amendment Petition posted at

In order to get the attention of our federal lawmakers, 10,000 signatures are needed. Here's your opportunity to help ensure that victims of MS and other chronic illnesses receive the assistance they need and deserve without having to fight for their benefits.

Here's just one of the many moving statements being made by those who ...
Read more : Voice Your Support for "Temporary" SSDI Benefit | Views : 1552 | Replies : 2 | Forum : General Discussion

HST success in diabetes type 1

This brasilian study shows 14 out of 15 diabetes type 1 patients do no more need insulin shots after HST. The average follow-up was 18 month.


link to the study at
Read more : HST success in diabetes type 1 | Views : 1410 | Replies : 1 | Forum : General Discussion

Jellyfish to the rescue

Interesting early stage compound.

Venomous jellyfish to the rescue

4/10/2007 -- -- In collaboration with a UW-Milwaukee lab, a Wisconsin biotech company is developing a compound from a protein found in jellyfish to act as a neuro-protective agent which may be effective in treating neurodegenerative diseases.

The neuro-protectant called aequorin could fight a whole series of degenerative diseases such as Alzheimer’s, Parkinson’s, Huntington’s, Amyotrophic Lateral Sclerosis (ALS), Multiple Sclerosis (MS) and other rare neuro-degenerative ...
Read more : Jellyfish to the rescue | Views : 1308 | Replies : 0 | Forum : Drug Pipeline

Modified bone marrow cells

Hi everyone,

We know that inflammation is a key part of the recovery and repair strategy of the CNS, now we have a protein, (TREM-2), which appears to play a vital role in this. Not only does it trigger macrophages, (white blood cells), to engulf and destroy all the dead bits of myelin which are hanging around after damage has occurred, but it then calms down the inflammation which, if it lasts too long, can ...
Read more : Modified bone marrow cells | Views : 1925 | Replies : 9 | Forum : General Discussion

Is it time to call it quits with fulltime work?

I can't rem if I posted about this before, may have! - sorry, memory is sometimes a bit ropey. Periodically gets to me....and this is NOT a pity-party-post - I have a very good life - just could do with some constructive advice about this situation.

I have just had 2 weeks off work as hols and have hardly thought about MS at all, felt so good. Even got the gym, did garden, went ...
Read more : Is it time to call it quits with fulltime work? | Views : 3255 | Replies : 11 | Forum : Daily Life

Update on Colby

I am so sorry that I haven't been around to fill you in on Colby's progress on LDN. I think of you often, and I guess in this case, no news really IS good news!

For those who don't know me, I am the mother of a 19 year old who was diagnosed with a very progressive form of MS at age 13. After 2 years of Avonex and Rebif, we finally got my son ...
Read more : Update on Colby | Views : 3178 | Replies : 3 | Forum : Low Dose Naltrexone


Read the last line

"Dancing With the Stars" fights MS
By Marilyn Beck and Stacy Jenel Smith
Article Launched: 04/09/2007 03:53:42 PM PDT

"Dancing With the Stars" is the inspiration for this year's Race to Erase MS gala being held Friday the 13th at the Hyatt Regency Century Plaza. The lineup of performers and celebrity fashion showmodels includes brothers Drew and brother Nick Lachey, Mario Lopez, Tia Carrere, Lisa Rinna and Harry Hamlin, Cheryl Burke, ...
Read more : Curious | Views : 1890 | Replies : 6 | Forum : General Discussion


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