Spasms and PT?

[runnermom3]

I've been on this roller coaster since October, so I'm fairly new. I'm also still in what you all call "Limbo" although my Ophtha-Nuero gave me that sad-faced "I'm sorry I can't give you an official diagnosis, but I'm going to nod and tell you that I think you have MS every time you come in to see me" shpeal yet again this past week... But anyway, sorry for the long story but its necessary for the question at the end...

Went in for my follow up after my EMG, NCS, and VEP/SEP and my Ophtha-Neuro asked how everything was and did the typical nuero assessment stuff. I felt like I did pretty good considering I was having a kinda "off" day to start with (didn't sleep well, had family in town, my neck was spasming like crazy, my left foot was numb, it was hot out, you know the deal). He said all seemed the same as last visit (which was only 2 weeks prior).

So then I told him about my "new" symptom, which is what I can only assume is what is refereed to as the MS hug. It started as a pain at the base of my skull, then a soreness in the front and back of my neck, followed by a feeling of electricity running down my spine. That went on for about a week. By that time I went to my PCP thinking that maybe I had some kinda problem with my allergy meds (which I had gone off of because my allergy season had ended). Long story short, she told me that I was having muscle spasms and that the electricity feeling was a nerve issue and to tell my Nuero at my next visit. She prescribed me muscle relaxers (which I didn't take because the side effects included headaches, numbness, tingling, and drowsiness NONE of which I need nor want more of). I started to pay more attention to the "pains" I was feeling in my neck and back and sure enough it felt like I was having off/on Charlie Horses in the muscles. It got worse at night when I was tired and then happened all night long and for the first hour after waking up (until my morning coffee kicked in), which explained why I was in the most pain first thing in the morning. Two days later I had what I would call my first MS hug. I was tired and hot after a full day of chasing my little ones around outside at the playground. I sat down on the sofa, exhausted after putting them to bed, and it felt like a muscle spasm that started in my neck went down my back and wrapped around my right rib cage and went all the way to the center of my chest. At first I thought I was having a heart attack. By the time I got up to find my phone and call my husband (who has EMT training) it was over and I was just sore. It happened again 3-4 times the next few days.

I explained all of this to my Ophtha-Nuero. He poked my neck and back a bit. Then told me he thought I had Cervicalgia and was sending me to a Physical Therapist for Evaluation and Treatment. Then he gave me a prescription for Naproxen and tried to send me on my way. I felt rushed out of the office as he hadn't even told me anything about my test results from the previous visit nor had he mentioned anything else about MS or anything. As he was sending me out the door I was like "woah wait a minute!" then I explained to him that he was the second doctor to have mentioned MS to me and that my symptoms were interfering with my daily life. I told him that I wanted a Spinal MRI (to go with my existing Brain MRI, countless blood tests and other tests, etc) to help explain some of these symptoms or rule MS in or out. I also told him that I'd been juggled between doctors for 8 months and that no one had actually TREATED or explained the original symptoms that I went in for in the beginning of October 2015 (numbness, tingling, dizziness). I told him that I hadn't been able to run since October and that it had gotten to the point where I had barely felt my left foot in months. 

He seemed sympathetic and sat back down with me in the office. He said "your insurance wont let me send you for an MRI, they will think your neck pain is an injury... the physical therapy will either make it better or it wont, if it doesn't then they will know it's not an injury and I can send you for an MRI" Then he said "if you have MS then nothing I do will make it better, I have to watch your symptoms... I have tests to compare future tests to now" then he said something that really hit me hard "if you haven't felt your foot in months, you might not ever feel it again... if you can run then run while you can."

So my questions:
1. I looked up Cervicalgia, I have no symptoms of that and it doesn't make since to me... Has it happened to anyone else that your doctor has diagnosed you with something entirely wrong and send you for a "second opinion" or treatment (in my case from a physical therapist) just to prove to insurance that other things have been tried before doing what they know needs to be done? Is this a normal procedure?
2. Does this sound like an MS Hug to you? They only seem to happen when I'm over heated or exhausted. Sometimes I wake up late at night with them.
3. Is your diagnosis story go something like this too? I'm curious if this whole first line of tests (which I assumed would actually lead to a diagnosis) area actually only only the "baseline" tests which will be used to compare future tests too, to show changes. How long did this process take for all of you?
4. Does what my doctor said at the end of my visit seem like he's trying to tell me, without actually telling me, that I have MS? It seems ridiculous to keep guessing and reading between the lines, but i understand he cant officially diagnose me without the right medical evidence, but it seemed like he's trying to tell me...

I admire those of you that have dealt with all of this mumbo-jumbo for so long. This is crazy! I feel like my body is falling apart.

[hunterd]

I want to reply to all of your symptoms, there are thousands upon thousands of other things that can mimic MS. It could be one thing or it could be many things that is why there are so many tests that need to be done. The last thing your doctor wants to do is to give you an MS diagnosis prematurely and be incorrect. The doctor is probably just being thorough. I do not know if your insurance company is to blame for any of this, nor would I even remotely want to suggest that. You can always see another doctor if you are not comfortable with the one you have.that is completely up to you. I am sorry I can't not be of any more help than that I do wish you the best of luck!

[jreagan70]

It's hard to know what's going on when your medical insurance seems to have so much influence over what you can and can't do.

But off the top, what your neurologist said about a spinal MRI series doesn't fit with how MS is worked up and diagnosed. The reason he should be referring you for a spinal MRI series doesn't have anything to do with a neck injury, so his explanation that your insurance will deny it based on the possibility of a neck injury is irrelevant and doesn't make sense. The reason for a spinal MRIs isn't your neck pain -- it's because a full workup for MS requires imaging of your cervical and thoracic spinal cords, not just your brain. It's impossible to tell whether you meet the diagnostic criterion of dissemination in space if he doesn't even look at all of the "space."

Consequently, he can't possibly be telling you, without actually telling you, that you have MS because he hasn't even finished looking for evidence yet and can't know with what evidence you have.

If your insurance has you locked in to one neurologist, then you may have to find a way around it and find a different neurologist for another opinion because some of what you've described about your neurologist just don't make sense. It's true that part of the diagnostic process for MS requires a recurrence of particular kinds of symptoms -- so sometimes you just have to wait for more symptoms to show up in particular ways.

But it's NOT true that, if you have MS, there's nothing that can be done to make it better. The whole point of the disease-modifying therapies is to try to prevent progression and, in some cases, stabilize the system to allow the body to achieve some healing. And the earlier the treatment is started, the better the long-term outcome seems to be. So it's questionable if your neurologist is even up to date on MS treatments.

My best recommendation is for you to start all over and look for a university medical center where the neurology department takes your insurance. Or find a specialty MS clinic that does. And if you can't find one that does, then try petitioning your insurance for an out-of-network referral to an MS clinic based on the fact that your current neurologist doesn't seem to be following the MacDonald diagnostic criteria or best practices for MS. Your neurologist denying you a full MS workup by manipulating your medical insurance -- and possibly having you burn through your PT benefits in a way that won't be of best value -- also seems like a good justification for getting a specialty MS referral.

All of the tests you have are worthwhile parts of the diagnostic process, but it sounds like you need an experienced neurologist who's qualified to pull the trigger on getting you diagnosed -- with whatever it happens to be. Good luck!

[runnermom3]

I thought it sounded fishy

Thanks for the responses. I know the process takes time and that the tests are worthwhile to narrow down the possibilities. I don't want an MS diagnosis if that is not what it is. But seriously I wish the Dr would just tell it to me straight.

At this point I'd just like any kind of diagnosis, ANYTHING that makes some kind of since that gets me treatment of some kind instead of continually getting brushed off or sent off with a "let's wait 6 more weeks"... this whole "I have no explanation for why you can't feel most of your left leg and hand and I'm not going to do anything about it" scenario is getting old.

I've been through EVERY blood test possible over the last almost 9 months (some more than once). All I'm missing is the spinal fluid test and the Spinal MRI. All my other tests have come back normal or close enough to normal to be considered normal. So even with a Spinal MRI I'm not sure I'd meet the criteria... but if there are lesions on my spine then at least I'd have an explanation for my leg and arm and a qualifying event on record and at least I could possibly begin treatment for to prevent future events...

Unfortunately, there are only 2 Nuerologists in my area that accept my insurance and the other one isn't taking new patients. It took me over a month just to get in to see that one I'm seeing now. My first PT is tomorrow and I'm going to tell her all the same symptoms of my "neck" pain as I told my neurologist. I don't see how she could possibly back his diagnosis of Cervicalgia because it just doesn't make since!

My Neurologist use to work in a Nuerology and Spinal Clinic which was famous in our area for treating MS patients. They disbanded a year ago and my Neuro started his own practice. I assume he knows about MS because of this, but there are no official MS clinics in our area or MS specialists in our area now that that Spinal Clinic is closed. I chose the PT that use to be associated with the Spinal Clinic, so hopefully that will lead me in the right direction... this is all so frustrating!!

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **