"probable MS"?

[steff642]

Hi everyone - newbie here and kinda worried. I have been in MS limbo for quite a few years now. I have had many symptoms typical of MS, but never enough diagnostic evidence for an "official diagnosis". In the past my doctor's have ruled out fibromyalgia, lyme disease, diabetes among others. I have suffered from numbness and tingling in my arms (carpal tunnel also ruled out) on and off for many years with no clear diagnostic cause. I have also had 3 instances where I have had temporary loss of vision in my right eye, don't know how to explain it, but my eye started to feel heavy and swollen (even though it wasn't), then I lost vision in it (was only able to see a "pinhole" of light), then my vision would come back - these symptoms would last for 2 - 3 days then my vision would totally return to normal.
The parasthesias have now spread to my lower extremities and I have pain down both legs to the back of my knees (recent lumbar MRI ruled out any sort of disc issues), and also experience extreme "charlie horse" like pains in my calves (recent blood panel showed potassium and magnesium are normal). At first my doctor thought the parathesias were related to my hyperparathyroidism and hypercalcemia, however had sub-total parathyroidectomy in March, and my calcium and parathyroid hormone levels have all returned to normal).
Last Sunday I experienced total right sided numbness, was rushed to the ER for TIA - CAT scan was normal (i.e. no bleeds or signs of actual stroke), Brain MRI was abnormal showing many "lesions" - this is where the "probable MS" diagnosis was mentioned by my PCP, however he would rather my Neurologist better interpret the MRI results. He said more than likely I have had the relapsing remitting? type for years and that I may now have a more progressive type since my symptoms are more constant.
A repeat MRI is recommended in 2 months. I was just wondering why they suggest a repeat MRI and what will they be looking for? My PCP (since he's not a specialist) did not give me an official diagnosis - just probable/possible. I guess have to wait and see what my neurologist says on Tuesday, but I am so nervous.

[Bob698]

A second MRI scan can show things like progression/inflamation over time.

Try not to confuse MS with the secondary (physical) symtoms. There are other neurological conditions that secondary MS symtoms can mimic. Your neuro just has to figure out what's going on. If your direct symtoms (the stuff you can't feel) don't meet the criteria for MS, they'll have to keep testing to find out what causes them.

[JerryD]

I know that it feels better when the docs can put a name to what your body is doing, especially when your body isn't doing good stuff. But, did it ever occur to you that even though your docs can't name it, you need to do something for yourself ? You have a right to feel better and you have already given the docs a chance to make changes for you. How's that working for you? Maybe there are changes that you can make in your diet and vitamin intake. What can it hurt ? Good luck

[Eliza Doolittle]

Yes...I believe that is a good idea. I started taking vitamins and making sure I drink lots of water and eat right. (Most of the time!) MS still makes me feel terrible most days, however. The nature of the MonSter I suppose.

[steff642]

Thanks everyone for your advise and tips. I do take good care of myself, I eat healthy (though I'm not a big red meat person), hardly ever drink soda and only 1-3 cups of coffee in the morning. I take a multivitamin , plus an extra dose of Vitamin D. I have had a lot of other symptoms, just didn't include every little thing since I already felt like I had written a novel up there, LOL.
Another question, why does heat make some peoples MS symptoms worse? We have had a horrible summer here (heat/humidity wise) and I just can't take it, it makes some of my symptoms so much worse. I really am praying that this is not MS, I just want some sort of diagnosis, I want a reason for why I have felt like this for so many years.
I think part of the problem of diagnosing me with "something", is that I would have symptoms, but then they would go away for a while, then return, so I'd make another doctor's appt, then go away etc. But now I have been experiencing daily symptoms for a while now. I would never wish MS on anyone, however, I guess it is sort of a relief to know that other people have gone through, or are going through what I am.....it makes me feel not so alone. Even if this ends up not being MS, I hope that I can still come back here for advise and to offer support for the rest of you.

[tuesdayschild]

I am probable MS too

and would probably make it all the way to actually having the diagnosis but I've opted to not spend insane amounts of money to get the rest of the testing done. My thoughtful decision made in full awareness of the risks and benefits. My neuro has ruled out all the mimics; however, without the rest of the testing (LP and evoked potentials) I'm not going to fit McDonald.

I am doing what I can to feel better and take care of myself. I am changing my diet, have lost 11 lbs so far, am working into an exercise plan, have added D3 (I am deficient), acetyl L-carnitine and alpha lipoic acid based on a lot of research.

Yesterday I had the best day I've had in a LONG LONG time. I overdid it, and am paying for it today, but it's worth every second of it to have had a day yesterday that was like the days I used to take for granted.

For me, like Shasi here, I am jumping off the diagnostic bandwagon for a while. I might, depending on my out-of-pocket costs, get the evoked potentials done but my out-of-pocket for the LP is crazy -- it's more than I earn in a week. Until and if I have a relapse bad enough to warrant medical attention, I'm going to do the best I can to take care of myself and live a good life.

I wish you the very best with your neuro. Maybe he/she can shed some additional light on what's going on in your body and give you some recommendations to help. Please let us know. We care.

[teacher7]

Probable MS a long time ago

While you are waiting to complete any additional tests I would strongly suggest you begin a conversation with your doctor about drug therapy. Ask him for information on all drug therapies available and then do your research. By the time you do (or not, hopefully) receive a diagnosis you are prepared. You can read about the importance of early drug therapy on the NMSS website. Best wishes!