Please help - MS?

[kiwiturtle50]

I would like some insight into whether my condition could be MS.
Long story short, for the past 3 months I've had paresthesia - tingling, pins and needles, prickly feeling, static feeling outside skin - all these types of weird neurological sensations - started with my feet and quickly progressed up to include shins and thighs. Also includes soles of feet and knees. This occurs on BOTH sides equally. I've had this literally every day since it started - it never goes away. At times it's worse than other times of course, but never have I seen a consistent improvement or lessening of symptoms. It's especially pronounced when I'm in hot or cold situations, though I suppose that's typical for damaged nerves no matter what the cause. Also, thank goodness, it's not worse at night and in fact I have no problem sleeping/getting good rest. Apparently that's not typical for a lot of people with these symptoms, so I'm thankful!
I do NOT have any numbness and I don't really feel like I have weakness, either. Also no pain. BUT it is very annoying and bothersome!
This is completely confined to my legs - except for the past couple weeks I have also had some burning sensations on my forearms/inside wrists, equally on both arms.
My blood work shows nothing unusual EXCEPT for slightly low vitamin D, which I'm correcting with a supplement. And also - low B12. My doctor thinks it's the low B12 and I totally agree. However, after a month of two B12 injections a week, I'm showing no improvement. If anything my sensations are a bit worse (though I have read this is common with B12 treatment - worse before better. It's just that I'm beginning to think nothing will ever help resolve this).

I have an appointment with a neurologist in several weeks, but in the meantime my primary care doc doesn't seem concerned about MS. But of course, I am!!!
I have zero other symptoms - no foot drop, balance issues, eye problems, no pronounced fatigue, nothing - and from what I understand this bilateral presentation of the tingling/etc.. sensations, with no numbness, isn't typical of MS. And it doesn't come one day, stay around awhile and go away, then come back, etc... it's just always present to some extent.
I also understand it can take awhile for nerves to heal after a B12 deficiency. But so far I don't feel any improvement in my symptoms at all, and I'm getting pretty discouraged.
As I said, my doctor - and also a good friend who's a doctor - have told me they truly don't see this as likely MS. Even though of course we all know everyone's different, the way this paresthesia is presenting is apparently not quite like the "typical" MS paresthesia.
If anyone has any insight I would so greatly appreciate it. Thank you so much!!!

[motherapple]

I’ve had MS for about 15 years. Occasionally I’ve noticed if I’m standing, I get this prickly sensation behind my thighs just above the back of the knee. It’s strange but both legs at the same time,same place. It comes and goes quickly. I really don’t know if it’s caused by my MS or not.

[HVAC]

What you describe does not sound like MS to me. MS usually starts with the eyes. It usually starts with the brain. What you are describing may be the peripheral nervous system which is not MS. Hopefully the neurologist can shed light on what is going on. Did your primary care do a neurological exam that is reflexes and such? If it was normal it is not MS. There are lots of conditions that share symptoms of MS. That is why when you google symptoms MS comes up as a possibility. We with MS are different but I have never heard of your exact symptoms as MS. There are certain patterns.
  
My MS started with my eyes. I have permanent double vision. My damage is mostly in the brain stem. Then I was hospitalized because I could not swallow. Then left side weakness both arm and leg.Then vertigo and cognitive issues. I have a rarer form of MS where symptoms never go away. I am now slowing when walking. I have failed neurological exams reflexes and such for years. My GP did one and decided I might have MS and sent me to a neurologist. My symptoms came on so gradually I did not know I had a problems.

[kiwiturtle50]

Thanks so much for taking the time to respond. What you have to say is very reassuring, but I'm so sorry to hear about your situation!
My GP hasn't done the neurological exam. However, I have an appointment with a neurologist in a few weeks and expect she'll do all the tests.
I was hopeful the past few days because, for the first time since this whole thing started, I had a couple "better" days. NOT good, just "better." I thought perhaps my system is finally adjusting to the deluge of B12 and the injections are working. Alas, just tonight suddenly my "sensations" are extremely  bad again. I suppose this can be the normal healing pattern of the nerves (or, the coating on the nerves... whatever it is). A little better, worse again, etc...
I can handle this, as long as I know this is definitely "normal" in slowly beginning to heal from B12 deficiency.
I'll try to stop worrying about MS - and once again, I appreciate your answering me and sharing your story. I wish you peace and comfort as you walk this road!

[supermum_ms]

Hi and welcome,

What you've described would definitely not be typical with MS, not only is it bilateral it's also symmetrical which are 2 common red flags pointing away from neurological conditions like MS. With the parathesia sensations being equal on both sides starting with your legs and just recently including your arms, both being affected equally too, it's just more likely to be more consistent with something like B12 than a neurological condition.

'IF' it had stayed only being in your legs, then a neurological explanations could still of been a possibility, though if it was lesion related, the lesion would have to be big enough to cut off the cord to produce bilateral and symmetrical, which would usually mean conditions like Traverse Myelitis (TM) are more likely.

Keep in mind that since your symptoms have traveled or spread to all peripheral limbs it's usually not consistent with lesion related medical conditions....

Hope that helps.......JJ      

[kiwiturtle50]

Thanks so much for this reply. Your answer fits with what I've been reading. As far as involvement in my arms, just to clarify - I don't have any of the tingling/prickling in my arms at all. It's only the burning sensation on my forearms that I now get occasionally. HOWEVER, I guess it's true that even if it's to a smaller extent, my arms are in some way part of this now. Which does mean all four limbs are now a part of this, with bilateral and usually symetrical sensations.
I'm going to keep on with my B12 injections and hope this is, indeed, what will ultimately help and that B12 deficiency is definitely the culprit in my case. For the first time, after my most recent shot a few days ago, I actually had two "better" days. Mind you, I still have tingles and prickles and all the rest, it's just that I experienced a few more "stretches" where it wasn't as noticeable. So I'm hoping beyond hope, things might be evening out a little and perhaps some tiny, bit by bit healing is occurring.
If you have any more insight, or if anyone else does, please feel free to share! :)