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Hello,

I'm 49/M.

For the past 2 years I have had nerve sensations (can't really call it pain) in both of my legs and forearms (not feet and hands). The symptoms have been somewhat consistent over the 2 years (i.e. they have not gotten significantly worse) It seems like they are in more places in my legs (rather than just in my calves initially) but this whole thing has triggered huge anxiety spikes so it's tough to say how much is amplified by my anxiety. I can't say that I have any other consistent symptoms other than a shoulder impingement and achilies strain I'm dealing with) and occasional dry eyes.

I went to 2 neurologists (1 who was an MS specialist) in the first year that the symptoms started. I've had a MRI of my brain and entire spine in addition to the neurological exams. Everything came back clear. I also had EMG tests of my legs and arms which were clean with the exception of confirming carpel tunnel. I saw a 3rd neurologist last year who indicated that, while he couldn't give me a diagnosis for the sensations, he didn't think the underlying cause was worth pursuing. I just saw a great rheumatologist who indicated that, based upon past bloodwork, and the exam he gave (strength, gait, balance and reflexes) this was not an autoimmune cause.

Closest thing I've gotten to a diagnosis is nerve compression due to stenosis and a bulging disk in my L4/L5 and possible fibromyalgia. Of course, my GP thinks it's all anxiety.
Question is if I should go back to a neurologist and push for a lumbar puncture. I had thought that the clear MRI's of brain and entire spine ruled out MS, but I've been researching PPMS (which, given my age and gender would be the likely form if MS I could have) and it seems as though the lesions are not always present with PPMS but a lumbar puncture can tell definitively.

As mentioned, I do have anxiety and, while the thought of PPMS is terrifying, everything seems to indicate that the sooner you can start treatment the more likely you can get on meds to slow down any progression.
I appreciate any information provided. Given how terrified I am ad the possibility of PPMS you men/women are all warriors for just living life and my prayers and admiration go out to you and your families.

Hi,
If it puts your mind at rest, what you have described doesn't sound like MS at all. 3 neurologists and a rheumatologist's opinion should count for something.
However, you should take your GP's opinion and stick it in the round filing cabinet. Nearly all doctors are poor at dealing with conditions like yours so they just say "its all in your head" as it's outside their frame of reference.
I'd suggest you go to a good myotherapist or remedial masseur and get their opinion on whether you are tight where you experience discomfort. Let them treat you. Your problems might be postural (your pelvis could be tilted, your shoulder muscles could be tight) and you could be creating patterns of sensation in parts of your body (your dermatomes) because of it. No scan or blood test will pick it up.
Don't let your anxiety overwhelm you. Look for the obvious and eliminate it first. Let someone put their hands on you rather than take pictures or look at your fluids in a lab.
Regards,

I appreciate the response and it does offer me some reassurance. I have started seeing a chiropractic neurologist and he has been solely focusing on muscle work in my neck and back so I think there is something to the muscle work suggestion as I have played rugby for over 20 years and also power lifting from my 30s through late 40s. So, I’ve put some wear on my body.

It’s been frustrating to have neurological (or neurological type) symptoms for 2 years with no answers. That being said, I’m grateful for the information I’ve been given about what I don’t have. I know My anxiety plays a role in all this but I really don’t appreciate it being offered up as the one and only issue as the sensations spiked my anxiety rather than the other way around. In fact, the plus side of my health anxiety is that it forced me to seek out specialists and get the testing done rather than rely upon my GP to make that call. One thing I’ve learned is that, at least in the USA, you have to be your own advocate.

Once again thanks so much for taking the time to provide thoughtful feedback.

ecb1171 wrote: ↑Wed Jun 09, 2021 6:14 pm I appreciate the response and it does offer me some reassurance. I have started seeing a chiropractic neurologist and he has been solely focusing on muscle work in my neck and back so I think there is something to the muscle work suggestion as I have played rugby for over 20 years and also power lifting from my 30s through late 40s. So, I’ve put some wear on my body.

It’s been frustrating to have neurological (or neurological type) symptoms for 2 years with no answers. That being said, I’m grateful for the information I’ve been given about what I don’t have. I know My anxiety plays a role in all this but I really don’t appreciate it being offered up as the one and only issue as the sensations spiked my anxiety rather than the other way around. In fact, the plus side of my health anxiety is that it forced me to seek out specialists and get the testing done rather than rely upon my GP to make that call. One thing I’ve learned is that, at least in the USA, you have to be your own advocate.

Once again thanks so much for taking the time to provide thoughtful feedback.

Greetings:

I agree with Scott1 that the neurological symptoms are probably musculo=skeletal in origin, especially considering your sports background. Actually, I believe that is true for Progressive MS in general. You might study how your skeletal structure impacts your spinal cord and the free flow if cerebro=spinal fluid and blood through the central nervous system. I wouldn't bother with any invasive procedure until you've really analysed structural issues. The Fonar upright cinematic MRI might be the most useful in such a study, but they are expensive. Some thoughtful chiropractic or osteopathic treatments might be enough to relieve the symptoms and give you more confidence. To better understand all this, my site https://www.mscureenigmas.net. Also check out the entries on TIMS by Chiropractor Michael Flanagan.
Best regards, Vesta

Hi , how have things developed? best wishes