more questions-- tingling in all 4. Is it MS-like or not??

[someqs17]

Hi again, guys.

I have been on the boards on and off for the past 2 years. I’ve described a bit about my symptoms and what I’ve been going through in other posts. In a nutshell, have been having MS-like symptoms on and off for the past 2 years. It started 2 years ago—in October—and have had several “relapses,” if you will, which all, coincidentally, seem to happen every October/Nov. The spring and summer are always fine, but when Oct rolls around I seem to have problems.  

My symptoms this time are very much like the other times they occurred (both last year and the year before) – tingling in all 4 extremities, visual disturbances (flashes and brief blurring), fatigue, dizziness, and on occasion nausea.  The new one this time around is terrible migraine headaches which is worrisome since I never get migraines ever-- also, advil does nothing for these headaches. of course, the timing with the tingling and the other symptoms is what concerns me. Yesterday I felt so horrible I could barely drive home and had to sleep for several hours to get my strength back up and my dizziness to subside.  This is exactly what happened to me last November-- I was bedridden for 3 days (with tingles) and all my lab results were totally normal- B-12, Sjorgen's, yada yada.

Anyway, I wanted to – once and for all—figure out whether or not my tingling is consistent with MS. I’ve seen some folks say that tingling in all 4 extremities (at once) would be unusual, but then I think I saw somewhere that it said that it could happen if the lesion was on the spinal cord. My concern is that I never really had a good spinal cord MRI. When my symptoms first started 2 years ago, I had one it was it on a 1T machine, so I don’t hold that to high esteem. Also, my symptoms were so new I doubt I had much to see anyway.

I’m going to see my neurologist on the 11th, but have been stressing about this and want opinions.

A couple questions:

1) Isn’t it strange that this keeps happening around the same time every year? I mean, I would think summer would be my problem—not October. At the same time, I thought my neuro may have said that some folks have more of a problem after the summer—something about the accumulation of the heat. Anyone hear about this?
2) Tingling. Is it unusual with MS to get tingling in all 4 extremities at once. I can’t completely remember what my “First” tingling experience was like because it was 2 years ago, but I don’t think it was in all 4 extremities…however, ever since, it has been a lot in all 4 extremities, though sometimes it will just be in one or both arms – though usually both (I think)

I realize I should probably get a spinal MRI. The problem is my insurance is HORRIBLE. The cost of getting a brain, a C-spine and T-spine is going to be close to $3k because each section (brain, c- and t) are separate studies—all billed at $2500 each and I have a 30% coinsurance, which is $750 x 3 ($2250) plus the remainder of my deductible. HORRIBLE!

Best,
Lauren

[summerluvr]

I don't have MS but I have other serious medical issues. I thought I had MS (and so did a few Drs but it turned out no)  so that is why I still lurk here.

Anyway, have you heard of Peripheral Neuropathy?  I have this at a "moderate level" according to my Dr. (as a side effect from chemo, compounded by a thyroid disease).

It causes burning and numbness (neuropathic) pain in my hands and feet (all 4 extremities) and also at times I get leg cramps, and some other stuff.  Right now it is flared up, and I'm wearing a hoody and big fuzzy slippers in bed as heat helps deal with the pain, which my body interprets as my hands and feet being constantly cold. Though my husband assures me they feel very warm to the touch.  The numbness also affects my sense of touch.

PN is usually a symptom, not a disease itself, but It might be something to look at, and then you could go from there?  

[Jifr]

Hi there.

1. I have about a dozen known lesions in my spine.  At least 8 in my C spine. My tingling/numbess has never simultaneously affected all 4 limbs.  When my L'hermittes is more active than usual - even then - it doesn't affect all 4 at the same time.    I agree w/JJ.  Tingling in all 4 at the same time does not sound "MS"ish.

2. Please please please look into co-pay assistance programs that are available to people with chronic diseases.  I haven't had to use one of the services but I know they are out there.   ALWAYS ask about assistance programs.  They are out there and there are options/resources available for issues with deductibles.

3. Whether or not MS knows what month it is - our bodies live a cycle.  I, TOO, seem to experience MS flares in October/November and May/June.  (I have MRI evidence to support the activity as well)  Maybe it's all just an evil MS  coincidence or maybe it means the environmental changes trigger the happy myelin munchers and makes them hungrier?  Maybe it's nature's way of telling us that we don't have a choice and it's time to slow down?  lol. I don't know.  No one has ever said anything about it.  I do think there is something to it but my disease course would throw off any curve so it's probably not worth counting in any study.

Best of luck to you in figuring this out!

Jen

[someqs17]

thanks JJ! yea, those costs are something, huh? i might look into different insurance...im not sure it i can pay out of pocket for something else, but i agree...ridiculous!

great info again re MS. ive had it in my mind for so long, i dont know how to even consider anything else, but you are probably right. ill talk to my neuro about testing and see what she thinks i can do. the visual testing ive had was totally affordable...in the low hundreds, or maybe only even 100, so ill definitely pursue that in the very least. for the MRI, i may just have to dip into savings.

[supermum_ms]

Hey Lauren,

Firstly.........holey cow(!) with copay costs like that, a chronic disease would have to be classed as a luxury expense for most people! I read the other day someone saying, that now her daughters insurance has run out for the remainder of the year, her Copaxone costs $4600.00 per month. If that's average price, you'd be paying out over 16 thousand a year, and that's for just one medication.......sorry but it just boggles my mind!!!

A1) The October connection doesn't make sense to me, i've said it before but MS doesn't care what month it is and relapsing on a schedule would not be typical. If your sx's were MS related, the heat of the summer months would commonly cause pseudo relapses, sx's coming and going as you heat up and cool down. If i'm understanding correctly, your sx's are not effected by the summer but reappear as the temperature is cooling down (October), I can't actually work out how "accumulation of the heat" could be right, in this situation.

A2) Sensory sx's in all 4 peripherals, is typically what's called a red flag, an indication that MS is a less likely cause, because it would be highly unusual for MS to present or develop lesions within a short time frame that would produce those sx's. MS is not the only condition that causes spinal cord lesions, and there are other conditions that peripheral sensory sx's. To give you a better idea of what i mean see...... http://www.radiologyassistant.nl/en/p4f789faf60fa4/spine-myelopathy.html

Overall, i have to think that it's not right enough for MS to be the most likely cause, something is definitely wrong though and i'm not sure how you've going to avoid the costs involved in finding out what's going on. From what you've said i do think another spinal MRI in case there is something there and I also think getting some visual testing, would be very important because those flashes could be a significant clue that should be looked into.      

Cheers........JJ