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Very scared...please help

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Old 11-16-2007, 04:33 PM   #1
Join Date: Oct 2006
Posts: 73
pinky3 HB User
Very scared...please help

My life has drastically changed in the last 8 months. It started the end of March when I came down with terrible weakness and fatigue. I was diagnosed with viral thyroidits due to an enlarged thryoid and borderline hyperthyroid numbers (they have never been out of range). I had never had experience with thyroid issues before and no one in my family had either. Since then, I have never felt really myself and have gradually gone downhill despite normal thyroid numbers. My endocrinologist does not think my symptoms are related to my thyroid and referred me to a neurologist. My symptoms started with:

*neck pain in back of neck
*weird chills from hips down
*strange leg sensation on right side only...a deep inner numbness but no loss of sensation on skin
*tingling in extremities including mouth
*weakness off and on in arms and legs
*off-balance feeling
*dropping things

The first neuro I went to did an office exam and said it was all due to thyroid, that thyroid can affect nerves for 6 mos afterwards. She ordered a neck MRI of the c-spine for the neck pain which came back normal other than neck spasm. I waited 6 mos, and the symptoms were all still there except for the chills sensation. I called her, and she blew me off saying it was still thyroid (by now my numbers were normal). Went to another endocrinologist who also said my symptoms were not my thyroid. He noticed I had peripheral double vision and referred me to a neuro. By now (Sept), my neck pain evolved into another beast...massive, intense head pain on right side only with worse off-balance feeling.

I went to another neuro who did not address double vision, so I thought it was normal. She was very abrupt and said I had complicated migraines which was the reason I felt the right side strange sensations. I had an MRI of my head and lumbar spine w/ and w/o contrast. Totally clear of lesions. She ran a bunch of bloodwork all of which has been normal. I had an EMG which showed muscle weakness, but she never addressed it with me. After my visit with her in early Oct., my headaches were getting worse, much worse, but she would not see me again until the end of Nov. She kept giving the front desk people all kinds of sample meds to give me with no clear instructions. And, the reason she gave me the meds was because I was calling everyday begging for some relief from this pain I had never experienced before.

Finally on Monday, I was so fed up of being ignored that I went to another neuro who is a headache specialist an hour away. He was very much on the ball. He took note of my symptoms and thought I could have occipital neuralgia in conjunction with chronic migraines. He addressed my double vision and noticed it was NOT normal. It mimicked the double vision pathways that goes along with MS. He said it was either from MS or thyroid, but my thyroid numbers were never out of range, just borderline. That coupled with the leg issue prompted him to do a lumbar puncture on Thursday (yesterday). The LP showed slightly elevated pressure which would explain the severity of the headaches. But, it would not explain the double vision since the pathways are different for that.

My eyes hurt, I see flashers, and I have double vision to the sides. Does any of this sound like MS? I won't know the results until next week, and I am so scared

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Old 11-16-2007, 05:01 PM   #2
Join Date: Aug 2007
Location: USA
Posts: 165
tuckersmom HB User
Re: Very scared...please help

Hello Pinky...right off the bat...yes, some of those symptoms do sound like MS type symptoms, however, they can be symptoms of other conditions as well. The fatigue, weakness, off balance, dropping things all sound familiar to me.

It sounds as if you have been through the wringer! Yes, the increased pressure indication from spinal tap can cause the headaches. I have had migraines for years and nothing works other than catching them right when they first start..slamming some aleve and straight to bed and "sleep it off".

It sounds like this last dr. you saw if being somewhat aggressive. I am blessed to say I have not had eye issues to date but many on here have and I am sure they will be writing to talk to you about that.

Please don't be scared. I know it is scary to think about having MS but it is most definately does not mean you will be bedridden and your life is over. Many people live very full lives, with families, careers and a "normal" happy life like anyone else.

MS is very individual. Some people have lots of symptoms, lesions and need lots of aids, some have just a few. Some people use one of the well known drugs used to slow down progression, some use herbs or other forms of treatment or some use no treatment!

Let's not get ahead of ourselves though. Wait until you get some more answers and then you can look at all of your options. The beauty of that is that you have some!

Please keep us posted and know we are here to help.


Old 11-16-2007, 05:25 PM   #3
Senior Veteran
Join Date: Apr 2007
Location: New York, NY
Posts: 2,161
Bearygood HB UserBearygood HB User
Re: Very scared...please help

pinky, I agree with everything Lisa say, including the don't be scared part! Trust me, I've only been dxed for 8 months so I remember that feeling well. But if it IS MS and as you learn more about it, it won't be as daunting. Certainly a mental adjustment but it does NOT have to "own" or define you.

Only thing I want to add is that you said they did an MRI of your lumbar spine. MS lesions do not occur in the lumbar spine. Besides the brain (most common) they can also be in the c-spine or t-spine but NOT in the l-spine (except for the very top portion where it meets the t-spine but that is covered in a t-spine MRI).

Also, make sure they tested B12 levels -- not all doctors do that automatically. Lastly, for your eyes, you may want to get a referral to a neuro-ophthalmologist.

Good luck and please keep us posted!

Old 11-16-2007, 06:18 PM   #4
Join Date: Oct 2006
Posts: 73
pinky3 HB User
Re: Very scared...please help

Thank you both so much for your thoughts and welcome!

I am more scared of the eye issues than anything else. I'm afraid that I'll end up blind if I have MS and have these symptoms already

I did have my B12 tested a couple times, and it was in the 500 range both times. I also take a B12 supplement. I have an appt. with a neuro-opthalmologist 2 weeks from today. I am having a hard time waiting that long.

I will keep you posted on the outcome of my LP. If anyone else has any thoughts, I'd love to hear them. Thanks!

Old 11-17-2007, 01:57 PM   #5
Senior Member
Join Date: Jul 2006
Location: Taos,NM
Posts: 216
taosdaphne HB User
Re: Very scared...please help

Try not to panic and be scared, hard tho it is. Sure, it COULD be MS, but could be something else. There's a saying that there's no use worrying because if it happens, worrying won't have kept it away; if it doesn't happen you wasted all that time and energy for nothing.

Stress is *bad* for MS (and for life in general). Find some ways to deal--walk in nature, listen to favorite music, treat yourself to bubblebath and candles, whatever.

I swear doctors are so pushed by insurance companies to see x number of patients, so we suffer from short appts. abruptness, etc. I am *so* fortunate to have both superb insurance (for NY state employees) and a really good set of health advisors. Those who treat me poorly hear about it--politely--from me and so does their boss, and I won't go back again.

I see my fabulous GP this week for my annual--she is the best diagnostician I know. We'll review drugs and the whole MS thing, which we haen't talked about at length.

If you can afford it, go to Mayo--it was unbelievably cheap for 5 days of tests, doctors, people who listened and really *knew* about MS.

Old 11-17-2007, 05:12 PM   #6
Join Date: Sep 2007
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Re: Very scared...please help

MS is 99.99% non-fatal. It can be scary when you do not know, but in the end, it is not bad. Relax, chill-out, and relax some more. Stress will bring on additional set-backs. Avoiding stress should prove the most effective medicine you could want. Bottle the positive energy and flush away the negative feelings. In the meantime- You are not alone!!

Old 11-20-2007, 07:27 PM   #7
Join Date: Oct 2006
Posts: 73
pinky3 HB User
Re: Very scared...please help

Update on LP...normal. The neuro called today to tell me that the results of the CSF were normal, so it looks like most of my problems are thyroid related and not MS. Thanks everyone so much for all your support. This board has a wonderful group of people here!

Old 11-21-2007, 03:52 AM   #8
Join Date: Aug 2007
Location: USA
Posts: 165
tuckersmom HB User
Re: Very scared...please help

Pinky3, I wish you luck with the rest of your journey. I pray they will be able to treat the thyroid issue and you will be painfree and symptom free as soon as possible!

On the side of caution, I have to say that many people who are later diagnosed with MS have a clear LP/normal CSF. It can take some time for MRI of the brain and spine/Tspine to show lesion.

I hope you are seeing a neuro-opthamologist for your eyes. Typically people don't go blind with MS. Their vision can be interupted and they can lose vision in one or the other eye for a time but it is most often not permanent. This is where seeing a good neuro-opthamologist is so important for any eye issues. How are the headaches now?

Wishing you nothing but good luck in your search for a true diagnosis. If we can help....ya' know where to find us!


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