[bskinner13]

Here is a summary of my intro thread, to help sum things up:

Hey all, I'm new, both the boards, and neurological diagnoses. For about ten years I have been having severe upper arm pain that has been getting worse and more frequent, which my old doc wrote off as 'muscle spasms', then gave me flexeril and sent me on my way.

I switched to a DO, who immediately had me do an upper extremity bilateral EMG w/ NCV. What they found was that I've got some form of dyemyelineating sensory greater than motor polyneuropathy, and also a C7 radiculopathy that is affecting my radial nerves (ie: causing my "spasms") .

My PCP did a lipids panel and I had her add in B12, since I didn't eat meat for three years (until I got the results back!) -my B12 levels came back at 150. I've been getting b12 injections, and the neuro says I will probably have to get them forever. I'm almost to my once a month's now though, so that's good.

Then the neuro ordered some more blood work- ANA, sed-rate, RA factor, and folate. They said all those came back normal, which was actually more distressing to me, since I would rather them find something than be back at square one. I have pretty severe back pain all the time (upper and lower), the neuropathy, and I was convinced the autoimmune stuff would come back positive, because my immune system is terrible- I am constantly getting colds and sinusitis (three times in the last six months or so), and my uncle had RA, so it seemed likely. I am always very fatigued, headachey, and often, but not always, have low-grade fever. I also have quite a bit of trouble breathing, but I am also an ex-smoker and my CO2 levels showed at 17 in my bloodwork. I have been constipated for at least six months, or longer, now. I have gotten used to going days without bowel movements, sorry if that's too much information. I will occasionally have LRQ pain, and one night I woke up convinced I had appendicitis or something because it hurt so bad, but it ended up being diarrhea- which after that episode, immediately went back to constipation.

The only severe pain I have right now (that isn't back related) is in my left tricep, but my hands do go a little numb from time to time, and sometimes if I'm doing something like holding my car keys, they'll just slip straight out of my hand.

Now I am back to being frustrated. I have to have a two and a half hr ish MRI tomorrow for the other half of it- they're doing my cervical spine, and my brachial plexus with and without contrast.


I am so frustrated and tired of being in pain. Does this sound like anything to anyone? Can B12 deficiency really be the one and only sole cause of this? My neuro told me that B12 def/neuropathy is usually more of a symptom than a disease within itself. I would rather be told I have lupus or RA or ss than have to wonder all the time. Ugh

Well now I have my MRI results back, and they have muddled things up even more for me. Despite the fact that the EMG report says "an old relatively healed radiculopathy that is possibly affecting radial nerves", someone from the neurology office called me and just said 'Your MRI was fine.'

What? Could they have just meant nerve-wise? I don't understand how an MRI of my cervical spine and brachial plexus could have NOT picked up the earlier identified C7 issue.

I'm so frustrated. I don't go back until August 2nd. Neuro wants me to get another EMG, this time in one of my feet, to confirm that the neuropathy really is peripheral. I'm almost considering taking all of my blood results and getting a second opinion with a rheumy.

The only thing they have identified FOR SURE so far is a B12 deficiency, and the EMG/NCV showed slowing in almost all of my sensory nerves, and a few of my motor nerves (in my arms/hands), so they're also confirming neuropathy, but seriously, can that be my only issue?! This is so frustrating.

I'm only 25 years old and I'm tired of this. Whenever my arm pain ("spams") get bad, the only thing I can do is grit my teeth, take my muscle relaxers, rub on a ton of topical pain creams, and lay on my heating pad until it goes numb, hoping it goes away. I can't even do simple things like sit down and eat or watch tv and wait for it to pass, I am in constant pain the whole time. It is without a doubt debilitating.

Until I can go back to the neuro, does anyone have any ideas? Does this sound like anything anyone else has/ has heard about/ knows about?

[echoes long ago]

get a copy of your mri report and see for yourself what it says exactlly. you should get and keep copies of the results of all of your testing.

[bskinner13]

Originally Posted by echoes long ago

get a copy of your mri report and see for yourself what it says exactlly. you should get and keep copies of the results of all of your testing.

I plan on it- I get records of all my bloodwork and any xray/MRI/CT I have to do. But I work in a dr's office too, from 8-5, and they're open 8-4:30, so I haven't been able to make it over there yet for that, or my last bloodwork either.

Does this all sound like it's JUST from the B12 deficiency though?! Or does anyone think this sounds like there is some other autoimmune issue at play?

[glenntaj]

--it depends on the spine issue; some mechanical issues, such as a bulging disc, can be reabsorbed/heal over time, and a disc bulge on an earlier MRI may not show on a later one. This has happened to me at the C3/C4 level (and I did question it, given that I had earlier films and reports). Problems with bone spurs (osteophytes) that cause foraminal narrowing are much less likely to resolve

That said, B12 deficiency can cause a very wide range of symptoms/problems, especially if levels are low for a very long time (and I bet your were). Not only may there be anemia, not only may there be peripheral neuropathy, but ther may be subacute combined degeneration, in which nerve in the spinal cord are demyelinated and damaged. There are even people with long-standing B12 deficiency who look like they have MS lesions on brain and spinal scans--one reason B12 deficiency is supposed to be checked any time there are neurological symptoms and unusual MRI readings in those areas.

[mrsD]

B12 injections don't always work the same for everyone.

I'd really support those with methylcobalamin(active form) oral 5mg daily on an empty stomach. At the end of 3 months your level should be at least 400, and hopefully 1000 or more.

Also I'd try icing your back area instead of heat. If you do use a heating pad 1) do so no longer than 10-15minutes as long term use of heat stimulates nerves, 2) don't apply heat to any area where you have put any topical rubs/creams. Heat applied to topical products drives the ingredients into the body past the skin and they can become toxic. A young woman died not to long ago from heat + BenGay. You can alternate heat and ice. Do either with moderation only.

Did you get your Vit D tested? Fixing that can improve your resistance to colds and sinus infections. If your Vit D is low, your cramping/spasms could be due to errors in calcium levels. Vit D will improve calcium absorption from your food.
Using OTC Vit D3 instead of RX D2 is more efficient and faster.

A level for B12 of 150 is quite low. It can take time for you to repair from this.

[Dr. Smith]

Originally Posted by bskinner13

I plan on it- I get records of all my bloodwork and any xray/MRI/CT I have to do. But I work in a dr's office too, from 8-5, and they're open 8-4:30, so I haven't been able to make it over there yet for that, or my last bloodwork either.

Any time we have testing done, we request copies be sent directly to us, so we get them the same time as the doctor. If they mess up, which is frequent, our doctor (and/or his staff) have no problem mailing us a copy. Just pick up the phone.

Doc

[pabb]

asap, get a complete celiac panel done....all of it, don't let them refuse. and don't allow them to do the screen, where if a certain test is neg, they don't do the rest.

[bskinner13]

Thanks everyone, for any and all input! Like I said, I am super frustrated from feeling so badly all the time. I am still pretty young and I'd like to enjoy it without grumbly tummy and fatigue and tingly arms all the time

The neurologist's office is pretty dreadful- they are nearly impossible to get a hold of, so yesterday I just filled out a records release at work and faxed it over to them for my bloodwork and my MRI to just be sent to me at work. Hopefully I get it soon, but I'm sure it will take at least a week.

I don't go back to see the neurologist until Aug.21st, so while I'm not opposed to getting a celiac panel- I'll try anything if it will fix this!- it would be quite a while before I get to see the neuro again to order it.

[Dr. Smith]

Originally Posted by bskinner13

The neurologist's office is pretty dreadful- they are nearly impossible to get a hold of, so yesterday I just filled out a records release at work and faxed it over to them for my bloodwork and my MRI to just be sent to me at work. Hopefully I get it soon, but I'm sure it will take at least a week.

It's up to you, but I still prefer snail mail to your home address. Some employers, particularly large corporations, monitor and consider any communications received/sent via their property (phones, voicemail, computers, copy machines, email, faxes, etc.) to be/become their property, including your confidential medical records, which they have no right to otherwise.

https://www.privacyrights.org/fs/fs7-work.htm/

Doc

[bskinner13]

It's fine, I get my injections done at work and have seen some dr's there, so they have my info anyway