Check in for those not yet diagnosed
 

Life without BrainTalk isn't much fun. It's great to see this back-up site up and running. I felt like an orphan, other MS forums just aren't the same.

If poor Mr. Lester gets a chance, it seems that we will have BrainTalk back, he did post and let people know the new software arrived Sept. 5th. A webmaster friend tells it will take a long time - the crash appears to have been quite significant. I wish Google would pick up this link better, it took me a while to find everyone on this secondary site. I know one thing - I will make a point of donating to BrainTalk when it's back - the crash would have cost a significant amount of money.

In the meantime though, it's great to see everyone who has found this spot. :D

For now, I'll just keep an eye on this thread and enjoy the other threads and hope some limbolanders (and Google) find it.

Home sweet home.

bumping - hoping there are other limbolanders out there. :)

Hi-

I am in limboland. During/after the last episode, the answer was "wait and see" so we waited, and now I am having similar pre-symptoms like right before things got really bad last time. I saw a new PC doctor today- we had a good long talk about my past symptoms/treatment and my current symptoms. MS got thrown out there as a likely possibility, again. So more blood got drawn and we will see what the results are, but I have a feeling they will be the same as last time- WNL.

BT was one of the websites that really helped me last time I was having problems. I was glad to find this site, even if it is only a temporary home.

Hi elle:

Frustrating isn't it - not to mention expensive if you live in the states.

Having been stuck in limboland for years, there are days when I want a dx, any dx. Three times I asked my FP (family doctor) for a referral to a gastroenterologist because of pain, vomiting, fainting, incontinence/retention. Three times he refused. I finally got the referral from the MS neuro in Ottawa, no questions asked. Maybe it's just IBS, but I don't think so, and after the colonoscopy from he##, I want answers. My FP doesn't know about the referral and I don't care. In the end we are our own advocates. BT has been a lifeline and a great source of info for me.

What sort of symptoms are you struggling with elle? Can your PC treat the symptoms for you?

Since 5% of MSer's don't show lesions, I have often wondered how many of us on BT in limboland fall into that category. I was so sure I was going to be discharged from the MS clinic because three MRI's were negative for lesions, just showed atrophy of the CC and cereral hemisphere. I have clinical signs. The MS neuro just smiled and said she has a lot of patients with negative MRI's and that doctor's don't know everything.

Good luck with the blood work - let us know how you are doing!

Hello everyone!

Cricket52,
I Hope you see this post. You mentioned that some MSers have negative MRIs. I had no idea that was possible! I was diagnosed with MG (myasthenia gravis) several years ago. However, my symptoms have escalated from muscle weakness in one leg/one hand to pain, muscle spasms, tremors and weakness in both legs and arms. I cannot stand and use a power wheelchair to get around now. My MRIs came back negative for lesions. So, my neuro is pushing for MG remedies - IVig or a thymectomy. At this point, I don't know what to do but my body is becoming weaker and weaker. Are there tests other than MRIs that can determine whether I am an MSer? Ive heard that it's possible to have both MS and MG at the same time. Has anyone heard anything about this?

Hi JSmythe:

Sounds like you are facing a difficult decision.

It has been said that 5% of MS patients don't show lesions. Some neuro's say that after 3 negative MRI's then it's time to start looking elsewhere for a dx.

MS is a dx of exclusion. I had my first symptom 30 years ago and only in the past few years have I been given a dx of possible MS. I have no lesions, just brain atrophy and clinical signs.

MG can cause weakness. So can many other neurological diseases.

http://www.nationalmssociety.org/Sourcebook-Topic.asp

At the top of the forum you can find sticky's that will give you links to other sources of information.

Hope that helps. It's frustrating trying to get to the bottom of something that is affecting your whole life. :(

ms
 

I Had The Same 3mri's A Few Years Ago They Came Back Neg,
But The Neuroligis Said I Had Invisible Ms.
After That The Clinic Closed Down . Couldn't Get My Medical Records , Had To Start All Over Again And To This Day No Other Neurologis Ever Mentioned It. I Have Every Nerve Problem You Can Mention Even Neurogenic Bladder . Can Anyone Else Comment On This
Duckybaby

Hi duckybaby:

Sadly for some of us limbo is a place we stay in for a long time.

A negative MRI, as you said, doesn't mean you don't have MS, it's just means there are no visible lesions.

Like you I have clinical signs - nystagmus, double/blurred vision, spasticity/clonus, pain, neurogenic bladder and bowel, neuropathic pain. The MS clinic I go to (five hours away) usually discharges patients after three negative MRI's.

They have kept me on, giving me symptomatic treatment and a quality of life I would never have had otherwise.

Oh - my evoked potentials were normal. My neuropsych report could not rule out MS-like cognitive issues. I have never had an LP.

I hope you can get to an MS clinic and find a sympathetic neuro. It's hard trying to get by on your own. The forums have been a great source of education and support. I hate not knowing why my life took a 350. Maybe you are one of the 5% that don't show lesions.

Good luck in your quest for a dx. Keep us posted.

BTW...Happy Happy Birthday Cricket..:)

Aww - thank you Sally. You are such a sweetie. :)