Paresthesia - MS? Please help!
Posted , 7 users are following.
I am desperate for some insight from anyone who might have reason to know a little bit about this, or who has experienced something similar.
In a nutshell - I've had paresthesia/neuropathy for 2.5 months in feet and legs. Both sides are affected equally. The sensations are pins and needles - mostly in my feet (including soles) and also a strange, static-like feeling on the outside of my legs going up as high as the mid-upper thigh... almost like a "phantom" feeling, but it definitely exists.. if that makes sense. I guess you could say an overall "tingling" though the static and pins and needles technically explains it better. The pins and needles can make my feet feel a bit "numb" just by nature of pins and needles - but they aren't truly numb. No problems with walking and I seem to have complete, normal "feeling" in my legs and feet. I don't have any pain. Sometimes the feeling can be almost like a burning, but nothing extreme at all in that regard. There hasn't been a day since this started that I don't experience these sensations. Sometimes it's worse and more noticible than other times, but it doesn't actually "come and go" since it's mostly there at least to some extent. The symptoms definitely DO get worse in heat - for example the hot tub makes it really bad. But they also get noticibly worse from cold, like when I'm in a cold supermarket, or sit in front of a blowing air conditioner or whatever. Other than that, there seems to be no rhyme or reason as to when it's worse or slightly better.
My doctor so far doesn't suspect MS - for whatever reasons that she hasn't completely explained to me. I don't have any other "typical" early MS symtoms that I'm aware of - strengh, balance, vision all seem fine.
ALSO - my blood work shows B12 level at 275. My doc says this is actually low (despite published ranges), and I totally believe her after all the reserach I've done. I took B12 sublingual supplements for a couple weeks that did nothing, then she started me on a B12 injection schedule: Two a week for a month, then one a week for a month, then every two weeks after that (or to be determined depending on need).
I was VERY happy since it seemed this could be the answer - and excited for the injections. But I'm pretty depressed now, since so far they don't seem to be making any difference. My symptoms continue, unchanged. So far I have had just four shots and it's only been two weeks total time since starting the shots. I have read so much conflicting info - but really want to know - could this all still be caused by B12 deficiency, and can there still be hope that I'll notice a difference? Is it normal for it to take this long for injections to make a difference, specifically for symptoms involving nerves?
Anyway, sorry I'm rambling. But my hopeful feeling this can all be explained by B12, is getting a little less hopeful since I'm seeing no improvement. And so then that makes me fear all over again that this could be MS.
By the way, I'm a 50-year-old female. No history of MS in my family. I realize these don't take away the chance it's MS, but wanted to mention it.
Other blood work is fine - TSH, free T3, glucose, calcium, all fine. Vitamin D at the very lowest of "normal" range so I'm taking a supplement for that.
MCH and MCV are just barely high, and that also could have something to do with my B12 deficiency.
My "sed rate" is very normal - 7 on a 0-20 normal scale. So I think that's good, since a high sed rate shows inflamation in the body?
I would appreciate people's opinions, or willingness to share your knowledge, so very much. I am really starting to feel like I'm going crazy.
(And yes, I will go to a neurologist at some point - just wanted to see in the meantime what people think. Are my symptoms very typical of MS? And also - could B12 still be causing this and it's just taking awhile for my nerves to heal)?
Thank you!!!
0 likes, 8 replies
molly54321
Posted
This is Molly again - I should also note that I'm right in the middle of menopause. Whether it be peri, or actual menopause, or whatever you want to call it. I've been lucky not to have any hot flashes or other more "typical" unpleasant things that can happen. But I'm definitely right in the midst of things because my periods are really becoming lighter and much less often - and my FSH is at 117 which apparently is very high. No doctor I've talked to seems to think the paresthesia symptoms in my legs and feet have ANYTHING to do with menopause/low estrogen. But I have read some stuff that says this CAN be something that happens as you go through this - I'm grasping at straws here and feel like it's probably correct that menopause isn't to blame. But does anyone have anything to say about that possible connection?
wendy80842 molly54321
Posted
Hi Molly, I'm in the midst of menopause/peri-menopause too. I was diagnosed with MS in 2004. Unfortunately, there isn't a standard route for MS to take, but, as you've read, your symptoms could be MS related.
I just wanted to mention that I'm B12 deficient, too, along with B12 shots, I was told that it was necessary to take folic acid, as one needs the other, for them to be at all efficacious (?!) I was told this by the Dr who originally prescribed them. I don't know if you're already taking them, but, here, in the UK, the necessary level of folic acid, is only available by prescription.
laura13569 molly54321
Posted
My situation is very much like yours. Sudden onset of numbness in feet, legs and through groin that started in March. Was first treated for stroke and then that was ruled out. Had a TON of tests (MRI, spinal tap, Lyme, etc., all which were within normal range. The hospital sent me home with a virus diagnosis. MRI did show over 20 'lesions' on my brain but I passed the spinal. Went to Duke for a second opinion and they do not think it's MS. The only difference from you is that my B12 is normal. My Vitamin D is low and my liver enzymes spike, most noticeably during my menstrual cycle. I am 53 and am at some point in my menopause. My numbness/tingling/static never goes away but it absolutely does increase around my cycle. I have been scouring the internet (something I normally would have never done regarding medical advice but have been chasingt this and I'm getting very frustrated) and you are the first persone to have most of the same symptoms. I would LOVE to talk with you is phone if youare receptive to that idea.
laura13569 molly54321
Posted
My situation is very much like yours. Sudden onset of numbness in feet, legs and through groin that started in March. Was first treated for stroke and then that was ruled out. Had a TON of tests (MRI, spinal tap, Lyme, etc., all which were within normal range. The hospital sent me home with a virus diagnosis. MRI did show over 20 'lesions' on my brain but I passed the spinal. Went to Duke for a second opinion and they do not think it's MS. The only difference from you is that my B12 is normal. My Vitamin D is low and my liver enzymes spike, most noticeably during my menstrual cycle. I am 53 and am at some point in my menopause. My numbness/tingling/static never goes away but it absolutely does increase around my cycle. I have been scouring the internet (something I normally would have never done regarding medical advice but have been chasingt this and I'm getting very frustrated) and you are the first persone to have most of the same symptoms. I would LOVE to talk with you is phone if youare receptive to that idea.
Treezie molly54321
Posted
Hi Molly54321--my experience with parasthesia was only explained after I saw a neurologist and had an MRI conducted. Way back in 1987-88 when I first felt it, I thought it was frostbite, because I had been camping. Sometimes the buzzing feeling was so intense--I was very alarmed. Back then I did not know symptoms would come and go, but it was only 12 years after the first sensations that I went to an MS Clinic and found out I had quite a lot of scabs (sclera) on my brain through an MRI. Supplements can sort of help, but not when it has already affected your brain. There are no preventative measures for MS that I know of. However the intensitiy of feeling or lack of feeling can fade with time and hopefully you won't develop the painful uncomfortable feelings. Oh my diagnosis was Nov 99. My symptoms progressed to include foot-drop. I also smoked a lot back in the day--I read a lot about other people with MS, like Jacqueline Du Pres, the cellist. I am glad a quit smoking in 2003 because I am convinced it is a partial cause of my neurological woes (made me feel better at the time--but added to the progression of the disease). In 2012, I began using a walker.
lisa37039 molly54321
Posted
Treezie lisa37039
Posted
jerome83251 molly54321
Posted
Not sure if you are still active on this site. I am wondering if your symptoms resolved or if you received a diagnosis. I have had similar symptoms for the past 2+ years however I have some visual disturbance as well. Please let me know. Jerome