Clinically defined MS without confirmed DX
 

Just a brief history.........
40 year old female with what I've been told by two different neurologist is clinically defined MS without a confirmed dx (past 4 years) MRI of brain, Cervical spine no lesions, but more than two clearly defined attacks with remission.

Recent "attack"as GP puts it was last June 2009. Having the time of my life on my first cruise and out of nowhere I have ON (per ship's dr), gait issues, heat intolerance for the first time ( since this all started I freeze all the time), severe non-radiating mid back pain-worse at night no change with movement, fatigue,increased spasticity. By Sept all symptoms except back to freezing all the time and slight blurred vision were resolved. Didn't see GP as I have a HUGE deductible and figured once again things had gone away. Baclofen 10mg tid and Advil tid.

About 10+ days ago sudden onset of weakness in right hand with no pain just not able to hold a glass, shift car-heavy feeling; non-radiating mid back pain worse at night no change with movement, untrollable movement of legs (I try not to move legs as this just caused sever muslce spasms and deformed looking feet and legs; severe fatigue as I have not slept for more than 3 hours/night for the last 10+ days, blurred vision has returned without pain, spasticiy increased in legs with balance issues and heat intolerance.

Got results of blood work-thryroid, CBC, etc and MRI brain only and everything is clear.

I'm starting to feel like I'm on the mend except for the thoracic back pain, spasticty, and fatigue.. Baclofen up to 10 mg bid and 20mg qhs, Excedrin or Advil 2 tabs qid but nothing has helped up today.

Any suggestions?
Many THanks,
Cordelia

Sorry if I missed it in your post, but have you had a lumbar puncture?

GP has mentioned LP. With brain MRI normal and I have a $5,000 deductible I'm leary to have the LP done.
Can a person have just thoracic lesions and not brain lesions and it be MS?
Thank,s
cordelia

have your normal MD do the full boat of blood work for the low level stuff like...vitamin levels (most of us have low D) make sure your B12 is up to snuff. That your tyroid if doing well, and that your Lyme is sent out. Get an ANA to check for Lupus and such while in the basic care (less expensive) office. Let him do the leg work.

Then take all of your tests, results, and profiles, (dont forget your personal journal) and head to an MS center. These guys are pro's! They are very good at staring this disease in the face and either declaring it, or finding another cause for your troubles. There are more than 100 diseases that can mimic MS, including lesions! scary when you think about it.

I do hope you feel better, and get some answers. ON is tough to deal with, but its a huge indicator of MS. I would get to a clnic for your initial dx. :hug:

Thanks so much for all the great info.
My new GP is really on top of things. Been through all the mentioned blood work and then some. Thyroid was only at the bottom of the normal range so she said it's not something to worry about just yet, but will keep a watchful eye on it. MSV was low and I can't remember what she said about that one. I'll ask her at my 2 week appt.

Acutally, this recurrance is a blessing. It reminds me of the many people with much worse problems than mine. I think I'll go home and bake a batch of homemade bread and take it to my neighbor who is terminally ill with breast cancer. Can't think of a better way to spend my insomnia hours.

Happy Day!
Cordelia

Welcome, Cordelia, nice to meet you. It sounds like your Docs think you have MS and you have been tested for all the other illnesses it could be, so, I would go with that and ask your Docs for meds to treat your symptoms when needed and live your life to the fullest.:)

When a real DX comes, will be the time to ask about Disease Modifying Drugs. In the meantime, enjoy all the benefits of your new home....the NeuroTalk Forum..:hug:

Welcome. MS is a common one and you have many of the symptoms. As was said above, there are so many others that can mink MS. I was wandering if you have vertigo or memory issues? When you had the problems, would resting will awake make them better? Was there any head pressure, headaches, light sensitity? I would get copies of the radiologist reports. You can usually get them from the imaging center. They sometimes say minor things that the Dr will not bring up and they later become larger things like mild ischemic areas, sinum impactions.

Some dx take a long time because they dont find some things right away. Try not to panic over it, just keep trying. The insurance is a little strugle. I would eventually recommend the spinal tap. My Dr did it in his office by him self with no imaging. He was very good at it.

Why did you ask these questions? Is head pressure, resting, headaches and light sensitivity all related to MS or somthing eles? I have all of the above. The head pressure is the worst and everytime I mention that symptom or complaint I get looks like Iam nuts. Its a feeling like my head is about to pop off or explode.

I had all of those, sometimes really bad. They checked me for everything, MS, lyme, the list goes on. They are now concluding I have CADASIL. I am not sure what you have CAT, but I will look back over your posts. I think we should talk more.