Update after the MS doc
 

I'm kind of depressed because I got NO answers at all. She said I don't have MS per the MRI, but couldn't tell me what is actually going on at all. Nothing. She said I need to see a neuromuscular specialist. I told her I have an appt with one of her colleagues next month in the neuro dept and she said great. I asked her about the hand tremor, fatigue, brain fog, etc and she wouldn't give me an answer, just "I'm here to rule out MS". When I asked her about what else could be causing this she either wouldn't tell me or didn't know. At one point she mentioned my thyroid, but after talking about that she changed her mind and decided it couldn't be that either.

She did say there is still a small chance I have it, but I would be in the very early stages, and that we'd need another relapse and MRI with lesions before a dx is made. If it does turn out to be MS, something else will happen soon and then we can see.

I know she clearly noticed issues with my right arm. She'd ask me to do something with my hand, asked me to do it faster and I couldn't. She watched the tremor happen. She just didn't tell me what she was thinking.

What the heck?

Is this the way it is? I've read so many of you it takes years to get a dx. And if it's not MS, what is it? She even challenged the small fiber neuropathy dx. She said I need to get a skin punch biopsy done to know for sure. Um, so I'm just feeling this awful PN for no reason?

Here are my current symptoms:
Neuropathy - EMG was neg for large fiber, stocking pattern
Tremors in one hand, intention or postural
Speech issues - stuttering and pausing to find right word
Hearing issues - ear doc said it's an auditory processing issue
Stomach pain - can't eat much at once, it's upset a ton
Brain fog
Fatigue
Balance issues
Feet always cold
MRI is totally clean, even with my migraines

So sorry Chaos.:( Welcome to the "wait and see" club.:rolleyes:

I can appreciate how frustrated you must feel and most if not all of us have been there too; either in reaching a diagnosis and/or finding some sort of symptom control aid that at least partially works.

As you've probably read here more than once, MS diagnosis is a process of elimination and the journey can be a long one especially when the MRI and other diagnostic tests come back clear. In time something may show up on them, and that has been the case with some people. They go on with symptoms for a while and everything comes back normal...then some time later, the lesions show up.

Unfortunately that is the nature of MS. Given that, it is understandable that physicians do not want to give someone an MS diagnosis unless certain criteria are met. One of them is the McDonald Screening test; which outlines the symptoms, frequency and other diagnostic evidence that must be present to make the diagnosis. Judging from what you have listed, you do not fit that diagnotic criteria...at least not yet.

Celebrate! Get some good disability insurance now and continue to pursue possible causes. That is the ruling out process that one usually has to go through. It is tedius and can be difficult because symptoms are there either way. Perhaps see if you can get some symptom control meds from your PCP while you go through the process.

I was diagnosed in 1978 when optic neuritis hit my vision suddenly and hard. At the hospital they did some neurological tests and found some deficits as well as a positive Babinski (spastic). When asked about the differences in feeling in my legs and lack of flexibility in one hip, I told them that I had aquired those since wiping out while snow skiing the year previous. The ER doctor at that time said that I probably injured some nerves when I fell.

The specialist who was taking care of me with the optic neuritis said that he felt that I had probably started with neurological symptoms around the time of the skiing accident if not before and then gave me the diagnosis of MS. There were no MRIs at that time. It was not a happy day because I was only 18, alone in Europe and in the middle of my second year of university there.
Getting sick was a one way ticket home and a drastic change of plans.

I'm sure others can relate how the diagnosis impacted their life. Yes, it is good to know what is causing the symptoms and possibly getting some treatment, but at the same time, not having it on record allows one to keep a few doors open.

That's why I say celebrate. You have some time to get your affairs in order, because once you get either the diagnosis for MS or some other degenerative condition, everything changes. For instance, I found out that I couldn't get disability insurance; even for a mortgage and the premiums for travel insurance are out of this world.

Take care of that stuff now, and most of all take care of your self as best you can. And know that we are here for you to lean on :hug::hug:.

With love, Erika

I know how frustrating not having a definitive answer can be...I was dxd in '08 after being told my sxs were from other things.

Even before I was dxd, I was denied twice for long term health care (nursing home or at-home care, costs ensued, etc), because I had sxs that resembled MS...they can deny us coverage even if we don't have a concrete dx!!

So try to get that kind of insurance before you get a dx of any chronic disease.And then all you can do is get enough sleep, eat right, try to get some daily activity, and live your life even as you keep a log of your sxs and questions to ask at your next doc's appointment.

Know that we are all pushing for you to find answers, and that we are all there for you. And that this is a really great place for info, laughs, hugs and support...I'm blessed that I found this great site!:)