Looking for opinions, not sure what to do next

[firemom31]

I have been living in Limboland since last fall, and I am now at a decision making stage and feeling unsure of my next step. I would love to have some opinions of others who have been there already. Last fall I developed some mild left sided weakness, difficulty raising my left arm as well as impared fine motor ability in my left hand. I had four falls in 6 weeks, one from a seated position. My balance was terrible. My left hip and thigh became numb and also had burning pain that was unbearable at times. My PCP had me start using a cane, put me on baclofen and gabapentin, said he thought I might have MS, and set me up with a neurologist.

Fast forward to neurologist. Took a history, ran labs for all the usual mimics, and did an MRI. The MRI showed multiple lesions in places he described as "all the right places for MS". Next step - lumbar puncture that was negative for O bands. The baclofen and gabapentin had been very helpful and I was regaining strength in my left arm, when almost overnight, both arms became almost impossible to raise, and I could barely walk when I first got out of bed. The pain in my arms and hips was terrible.

I went in to see him for follow up from the LP, at which point he says there isn't enough to say it's MS, but he can't say with certainty that it isn't, so he wants me to have another MRI in 6 months to look for new lesions. Not willing to leave his office in the condition I was in, I begged him to do something to help me feel better. He examined me again and asked some questions, sent me straight to the hospital for some more labs, and diagnosed me with polymyalgia rheumatica, and started me on steroids. I felt like a new person within 24 hours. So now I have that disease in addition to the possibility of MS. He is scheduling me for an EMG next week.

All of this long story leads me to my dilemma. I can't decide if I should wait the 6 months and spend that time working on recovering from the PMR, or ask for a referral to an MS specialist. I really like this doc, but I worry that I may be causing myself harm by delaying treatment if I do have MS. On the other hand, in the grand scheme of things, is 6 months going to make or break the course of the disease? Hopefully this makes sense. There's a lot I left out for the sake of not making you fall asleep, so feel free to ask questions.

[jreagan70]

Hi firemom:

I'm glad you're feeling better.

I worry that I may be causing myself harm by delaying treatment if I do have MS. On the other hand, in the grand scheme of things, is 6 months going to make or break the course of the disease?

Would it ease your worry to know that the steroids you're taking for PMR are also covering you for possible MS inflammation? MS flares are treated with steroids, and steroids are sometimes used as a "preventative." So you're taking care of two things with one med for the time being. (Without confirmation that you do have MS, it's not important how much steroid you're taking.)

Six months isn't going to make or break the course of MS. But I still think it's a good idea to ask for the referral to an MS specialist now anyway.

It can take a couple of months to get in for an appointment. And, in theory anyway, it will be beneficial to have a specialist who has more experience in knowing the difference between the effects of MS and the effects of PMR. And if it turns out that you do have MS, and even though a few months won't make that much difference, it's better to start an MS treatment med sooner rather than later.

The only question I have relates to baclofen. You said you were having weakness. Baclofen is a muscle relaxer. It isn't clear why you would need to relax muscles that are already weak. So why the baclofen? Did you leave out the part about spasticity?

I'd also like to give you props for speaking up for yourself with the neurologist. Because you took an active role in advocating for yourself and didn't leave the neuro's office without him doing something for you, you got help for your pain and got a diagnosis much faster than it would have taken if you'd just quietly gone home.

There are far too many posts in MS and other forums from people who just passively went home without answers and then posted on the Internet trying to figure out, after the fact, from people who weren't there, what happened. So kudos to you, and I hope you can be an inspiration to others to take an active part in their own healthcare by speaking up.

[firemom31]

Thank you for your reply

Regarding the baclofen, I was having a great deal of spasticity in my left arm and leg, as well as spasms in my fingers when I would reach for something or try to grip a pen. I wanted to try to work my left arm to improve strength but found that the muscles were so tight that I couldn't use it for much of anything. The fingers on my left hand had even started to contract. The baclofen relieved all of that, although the weakness has not improved much.

I am generally very proactive with my own health care. I am (was) a medical assistant and have worked for doctors and in hospitals for most of my life, so I know the patient needs to be their own advocate. I think the only reason I'm feeling reluctant at this point is because I feel so much better on the steroids and really want a little break from all the poking and prodding.

The part that really worries me is that I couldn't function without all the pills, even before the PMR hit. This tells me that there is something very wrong going on. I will be having an EMG within the next week and then seeing the neuro again on July 13th. I think I will make the decision about the MS specialist when I see him on the 13th. He offered to get me in to an MS specialist, and I have access to University of Florida, so I think I will take a break for a couple of weeks and then I will probably do it.

[poohb3ar]

i'm glad you finally got a neuro to examine and help you! i have had numerous neuros over the years. most didn't impress me much. if you have one you really like, don't cut ties with him!
going to a specialist doesn't mean you have to quit your neuro. a 2nd opinion is quite common.
though if the specialist is great and you feel comfortable and well taken care of, then you got a win- win.

explore your options. you are your own best advocate and if you don't speak up for yourself, believe me, no one else will!

take care & God bless ya!

[alk]

I didn't get an official diagnosis until I saw an MS specialist. One of the main reasons for this is because MS doesn't have a definitive test that will tell you for sure that you have MS. My Neurologist that diagnosed me said that a person has to have 2 of 3 criteria to be diagnosed.

1. an active lesion that shows up on an MRI
2. scarring from previous lesions that can be seen on an MRI
3. lumbar puncture

In my case, I didn't have a lumbar puncture. The doctor said it was unnecessary because I had an active lesion and scarring. Plus he said the lesions were in a normal place for someone with MS.

Doctors are hesitant to diagnose MS and I can see why. There are so few out there compared to other diseases they see on a regular basis. You should see a specialist just to confirm you have MS. The neurologist you go to now would be able to help you with treatment but both of you would probably be more comfortable getting that second opinion from a specialist.