First I have it, then I don't

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New Member

Date Joined Dec 2011
Total Posts : 3
   Posted 12/17/2011 12:28 AM (GMT -6)   
Hello everyone. I am going to give you a long-winded one for my first post, so I will apologize up front. But it has taken me two years to get to the point of joining a forum and posting my questions, so a lot has happened and I am quite confused.

I have been reading a lot about MS online for almost 2 years now. That's how long I have been dealing with the question of whether or not I have it.

about 2 years ago I had a sudden onset of a weird set of symptoms:

I had "drop foot" on my left side and it was like I couldn't get my foot fully off the ground, I just drug it around and that persisted for a few weeks.

I started having extreme fatigue and some dizziness and loss of balance, and I couldn't stand the heat. If I got a little heated I became completely disoriented and couldn't think or focus on anything.

In addition I had shooting pains up the back of my head when I moved it a certain way, and pains around my middle and chest which seem to fit the description of what I have seen called the "MS hug".

Lately I have begun having trouble swallowing. Food just gets stuck in my throat and it feels like I am going to suffocate before I can get it to go down. It is also very painful.

My eyesight has deteriorated quite a bit in the past couple of years. I have worn glasses since childhood (I am 58) but in the past two years my eyesight has become "unstable". It fluctuates from day to day with weird distortions in vision, difficulties with light and what my optometrist calls occular migraines where I can't see anything but distortions and flashing lights and I have to close my eyes for 20-30 minutes until it passes.

Speaking of migraines, I am also having them for the first time ever in my life. I have never had a problem with headaches at all. Now all of a sudden I get blinding migraines.

I get occassional numbness in my fingers for no apparent reason that sometimes lasts all day long. I also have what seems to be episodes of Reynaud's Syndrome, mild.

I am sure I am forgetting something, as my body is experiencing so many odd things, but that's a pretty good picture of what is going on with me.

My primary care doctor sent me for an MRI two years ago when I had the initial onset of symptoms and the result came back showing that there were brain lesions present. The radiology report stated that the lesions were "consistent with a finding of multiple sclerosis". My primary care doctor told me I "most likely" had MS but that he would send me to a neurologist to have it confirmed. I had to wait a couple of months for that appointment and during that time I tried mentally preparing myself for what my future might be like with MS

When I got to the neurologist he said no, I did not have MS. That the brain lesions he was seeing on the MRI did not look like MS lesions to him, but possibly were related to a past episode of high blood pressure or some other unknown condition. My symptoms subsided somewhat after a time so I took him at his word and just thanked the Lord that I did not have MS. Six months later they did a second MRI and told me the brain lesions were still present, but had not changed significantly so they were going to stand by the negative diagnosis. (The reasoning being that if I had progressive MS, there would be more lesions than what was on the original MRI.)

But over the past 2 years symptoms have continued to appear, and do come and go continually. Not always the same ones or at the same time. Sometimes it's just one thing or another, sometimes several things at a time. Yesterday my food got stuck in my throat a couple of times and my left hand was numb all day. Today I had the pains in my chest and shoulder area that felt like an elephant was sitting on me and squeezing all of a sudden. Some days my balance is off, or I feel disoriented. Other days it's an occular migraine or I'm so tired I feel like I can't move (even after a good night's sleep). As far as that goes, I seem to be tired all the time lately. I have always had lots of energy, but now I barely seem able to make it through the workday sitting at a desk.

I have had other autoimmune diseases. I had Hashimoto's Thyroiditis 30+ years ago. I have been on synthroid for all these years, get tested regularly and maintain normal thyroid levels. I also am seeing the onset of arthritis and am asthmatic (under control). An MRI of my back a few years ago showed significant degenerative disk disease. It seems my body is hell bent on destroying itself. (My daughter also has a serious autoimmune disease, scleroderma, with the most severe case of Reynaud's Syndrome her doctors say they have ever seen.

So, all that to get to these questions... Since I am still having symptoms and since the MRI did show lesions, is it possible the neurologist is mistaken and that the lesions are in fact related to MS? Or could they be responsible in some other way for all these symptoms even though he said they were "benign"? Has anyone else gone through this kind of diagnosis confusion to find out eventually that they do in fact have MS? Are these all truly MS symptoms?

If anyone can shed any light on any or all of these confusing questions I would be greatly appreciative.


P.S. I have had my insurance with Kaiser Permanente for 20 years so did not have a lot of options for seeing specialists. It was really just whoever they sent me to. We have just changed our insurance plan to Cigna so I will be able to seek out specialists on my own. I am just wondering if this warrants me going to a specialist right off the bat and telling them I think I have MS

Post Edited (oldragbagger) : 12/16/2011 10:33:54 PM (GMT-7)

Forum Moderator

Date Joined Jan 2007
Total Posts : 3571
   Posted 12/17/2011 1:25 AM (GMT -6)   
You should definitely see an MS specialist. You have lesions on an MRI that are consistent with MS. You need to have it ruled out. It often takes years to get an MS diagnosis.

Your symptoms are not totally consistent with MS but of course I am not a doctor. You may find it difficult to get a diagnosis of MS or anything else because you already have health issues that could potentially be blamed for the symptoms you are experiencing.

Good luck to you. Please ask any questions you may have.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

New Member

Date Joined Dec 2011
Total Posts : 3
   Posted 12/17/2011 10:34 AM (GMT -6)   
Thank you for the reply Gretchen. This may be a long road, but I'm already on it so I will keep traveling and see where it goes.
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