Hello everyone, i'm fairly new here. I've posted under the aneurysm forum before. I am in limbo, believing I have MS but not able to get a diagnosis. I don't WANT MS, but would really like to know what's wrong. How long did it take you to get the diagnosis? Have any of you been in the same place I am (negative MRIs, normal LP), yet exhibiting most of the symptoms of MS?

Here's my story:
I had a mild stroke in December 2005. I made a fairly nice recovery, but had problems with fatigue, balance, bladder and bowel control, and cognitive issues. Then I added a constant slight dizziness to the mix. I saw an ENT and there were no inner ear problems. I started having occasional 'spells'. I would have what my 'then' neuro diagnosed as seizures, and my cardiologist diagnosed as neuro-cardiogenic syncope. I would pass out (or almost pass out), losing control of my bladder. Awful stuff. It would take me a few days to recover from this. I was queasy and absolutely wiped out. The cardiologist put me on a beta blocker. I felt WONDERFUL for about three weeks, then slowly the dizziness and fatigue came back.

Almost two years ago, I had a day of such extreme fatigue, I thought I must be coming down with the flu. The next morning when I got up, my left leg was completely numb from the hip down. I gave it a few days, thinking it would go away. My primary checked my pulse in my legs and said that they were good. So, i got a referral for a new neuro (mine had recently moved) and he ordered a head MRA. He found lesions but said they were not consistent with MS lesions. He said they could be caused by my stroke, high blood pressure, smoking, etc. A spinal MRI revealed no cause for the numbness, and no lesions. Another MRA a year later revealed new lesions, but they believe they are due to the better equipment. I had the MRAs done at two different hospitals.

In the meantime, my neurosurgeon who treated me when I had the stroke has been monitoring me since then because a small aneurysm had been found at that time. At my last appointment in May, it had grown enough that he said it was time for surgery. SO, I had that clipped in June.

I had a 'relapse' after the surgery, where I felt totally disabled for about 3 weeks. During that time, I had an appointment with my neuro. I decided I would go ahead and have the LP. I had actually hoped it would show something so I could finally know what was going on. No such luck, it was normal.

Some of the symptoms I've had for the past 2+ years are:

Fatigue (constant-sometimes extreme, lasting days to weeks)
Dizziness
Balance problems
Gait problems (which causes pain in legs and hips)
Sudden electrical pain in right shin (about brings me to my knees)
Tremors (mostly on the left, and interferes with small motor skills)
Blurred vision in left eye (diagnosed as Uveitis-constant)
Numbness and coldness in left leg (constant)
Muscle spasms in calves
Feet feel like they're broken (especially after a period of rest)
Pain and burning pain in legs worse on left (the more I'm on them, the worse they are)
Neck pain (I don't have the L'Hermittes?) sign (more of a stiffness with random pains)
Restless Leg
Heaviness in limbs
MS Hug (I think)

There's more, but I've rambled on enough. Thanks for reading this long post and I'd love to hear from you if you have anything to share. I think I'm going to go to an MS specialist but have not made an appointment yet. Thanks everyone!

Patti in Wisconsin

((((Patti)))) you have been through the mill and still no DX. When my DD was DXed, they thought she had had a stroke, until the Neuro found out that her Mother(me)has MS. She hadn't had a stroke at all. What she had was an MS flare.

I hope your MS specialist will be able to see what's what and take you out of limbo.

Welcome..

You and your doctor have a very full plate! Try not to worry as to whether it is MS or not. Many things can mimic MS. However; I know how you are feeling.... not knowing what is going on. Not knowing is worse that actually getting a diagnosis....even if its something you don't want to hear. So we worry and worry causes anxiety and things just get worse!
My MS did bizzare things for 12 years before I had a positive MRI and a definate diagnosis. But it can come quickly.....11 years of tests and MRI's that were negative. Then a repeat MRI in the 12th year was negative and 6 months later it was positive.
Your symptoms sound like things that happen with MS, but you've also had other things going on.
Please hang in there and take care of yourself....keep going to the doc and please keep us posted.

I know I had it pre 2001, but that was the year it really showed its head, and I was searching for answers. I worked hard,and was dismissed by several. 2006 I met a very nice MD who took the time to slow down and really listen. he made all the difference. I was dx in 2007.

I do hope you find answers. I used to tell them, even if I am crazy, please tell me, but dont just tell me I am whiny. Of course I am whiney! I dont feel good!

clear MRIs for many years..symptoms starting with numbness/tingling issues since lets see.... 2000 so 10 years undx ... have dizzy/vertigo spells, right eye blurriness, balance issues, sensation issues(like cut self and not know it even), spasms and stiffness pain ankles neck and back... (that is newest thing), Physical Therapist confirmed that right side is WAY weaker than left side.. and helped work on that... many side drs ask do you have MS or have you been tested for MS... haha... Memory extreme deficits...

on neurontin for the painful tingling pain, baclofen now for muscle spasms, and have pain meds for when really bad... at times put on prednisone to calm things down.. etc...

long long trip... of no where answers... sorry to scare ya on how many years.. but know if you find a good doctor that will keep searching is the best info...
I have had babies during this time frame since... and each pregnancy I am sooo very feeling great... but since I have five kids and work full time thru this.. not option to stay preggo to avoid symptoms lol...

good luck and hugss,sarah

As was suggested, you can have various diseases causing different symptoms.

I was dx'd with MS about 27 years ago, after many years of symptoms such as dizziness, light sensitivity, stomach pain, sensitivity to many drugs and foods, blind spot, double vision, narrowed field of vision, drooping eyelid,
clumsy hands, exhaustion at work, etc. Some of my symptoms were "typical " of MS and others were not, as you can see from the list above. Stomach pains are not a predominant MS symptom, nor is drug sensitivity.

Then I was dx'd with Porphyria, another disease, which explained some of these things, but the MS dx did not go away....some people though I had MS rather than Porph, as testing a proof can be hard in both diseases. Now I have yet another disease, Polycythemia Vera, which makes my feet numb and painful, since I have too many platelets and red cells.

I can tell which symptoms are from which disease, more or less, but they can become confused too. Just when I thought I had it down cold, the PV
reared its head.

So my life since 17 into my late 70's has been a long history of wondering and seeking and coping with symptoms. And coping with doctors who were not sure, or were too sure, or were just overwhelmed by complexity and by
Medicare.

You may have more than one disease, or you may have one that causes all of those symptoms.

thanks for all your advice and encouragement! i know it's a long and frustrating road and i haven't been on that road all that long. from what i've read, there's a lot of people that have been in limbo for many many years. it's just so frustrating! i've also applied for disability and am having a hard time getting it. i lost before the ALJ and am waiting on an appeal from that. feeling like having a diagnosis would help my case. all the other things don't seem to be enough.

patti

getting it may not be related to having a dx. I had a dx of MS when
I applied, but I still lost twice, and won on the third try. One reason
I won was because my records had been lost, and my congressman
found them. I think his finding them had a beneficial result on the
consideration, but who knows? It seems to be almost routine that
no one wins on the first try.

I did win on the first try with my private disability from work. They said
I was incapable of doing any work. I was very bad at that time, and they
gave me a four hours test by a physiatrist. That is a person who tests
your capacity physically and mentally. I got better later...I was really
bad then, but it didn't help with Social Security.

If you look good or look capable, I am told, it works against you, but
I was not going to deliberately look bad, and on the day I had my
hearing I was well enough to walk and hold my head up and answer
questions. It all depended on the day. But I persisted in making out
forms for several years and got the disability. What a racket...if they
tested you as they did for my private disability, it would possibly help?
But it seems to be a crap shoot, and many get it on their third try.

Mariel, I've had the testing through the SS Examiner and he said 'claimant would have substantial difficulty performing even routine simple work'. Guess the judge didn't think so. It does work against you, this looking fine. My illnesses you can't see and, like you, I can't bring myself to 'look my worst'. I'm also honest and probably 'minimize' my problems which doesn't help me either.

I'm not giving up though!

Hi Brainfreeze

It sounds like you are just like me! Only I did things the other way around. I was diagnosed with MS in 2001. I had lost around 50% of my vision, was falling all over myself when I tried to walk, and had bladder and bowel problems (along with the itching, burning, crawiling stuff). Diagnosis was immediate, and without question for me, as my MRI showed LOTS of lesions affecting lots of different areas of the CNS.

Then in 2003 they found a 5 mm intracranial aneurysm on my pericallosal artery. It was an incidental finding (they were teaching someone to use the machinery and did an MRA as well as a routine MRI for my MS.) I had that clipped in 2004. How lucky was I that they found it before it found me????

I fell in a heap after my craniotomy too, all of the MS symptoms flared massively and brought a whole lot of new ones with it. As you know, the brain heals very slowly and it took a long time and a lot of very strange symptoms to get over it. It was almost like my MS was poking it's tongue out and saying "Ha Ha you can fix that, but you can't get me..."

Keep trying, I know you don't want this, but the sooner it is worked out, the sooner you are in a position to deal with it. Lesions on MRI are not the be all and end all of MS.

Hugs

Lyn