Fibromyalgia, CIDP, MS, or who knows what

    • August 14, 2018 at 9:29 am

      I have, what has been thought to be MS at the beginning, to what is thought to be Fibromyalgia, peripheral neuropathy, essential tremors, and chronic fatigue syndrome.

      I have been dealing with this for two years. Today, I am going to see a new doctor at the Vanderbilt MS clinic. I am hopeful that some kind of diagnosis that makes sense comes of it.

      I’m thinking that it might be CIDP, because most, if not all, of what I have fits.

      I had EMGs of my legs early on, and they showed neuropathy. The first EMG of my arms and hands, showed nothing. The second EMG of my arms and hands, done recently, shows very slight loss of nerve function in my left arms (nothing of concern, according to my current neurologist).

      I had a lumbar puncture, over a year ago. It showed a slightly elevated protein level. But, that’s all. No MS signs. (Again, nothing of concern, according to my current neurologist).

      And MRI of my brain, showed some small white matter lesions, which according to my neurologist are not really indicative of anything, and may even be age related. I think I was 46 at the time. I’m 48 now. The MRI I had of my neck and back, showed normal. The multitude of tests I had for tick borne illnesses, all showed negative. Including, one done recently.

      I have tingling, burning, and numbness in my arms, hands, legs and feet. My legs and feet feel like they are made of lead. I walk with a cane, and use a mobility scooter, when any type of long walking is required. Walking on uneven surfaces, is incredibly difficult.

      My hands, arms legs and feet are weak, and fatigue easily. My hands cramp up easily, which makes using a cane painful and difficult at times. My fingers are very uncooperative, especially when trying to do things that require detail. I drop things a lot. My coordination is shot.

      I always have pain in my arms, hands, neck, and shoulders. In my neck, it’s where my head and neck meet. In my legs and feet, I don’t feel the pain as much. But, I do get sharp stabbing pains in them, at random times. I have tremors in my head and hands at times. Especially, when symptoms are at their worst, or I am tired.

      Overall, I tire very easily. I frequently need naps during the day. To sleep, I have to take Flexeril, or there is no sleep due to pain.

      All of these symptoms, seem to be getting worse over time, to where I have a very hard time walking currently, and the pain, even with medications, is increasingly difficult to deal with.

      On top of all that I have mentioned above, I have memory loss, and trouble concentrating and thinking.

      I just want to figure out what is wrong with me, so I can try to get some help. I was on 3000mg of Gabapentin, to manage the pain. I was recently switched to Lyrica, to try and see if that would help more. It might, but I can’t seem to get above 300mg, without feeling like I’ve been drinking heavily. So, I’ve recently added full spectrum CBD oil to the mix, to see if it would help (it’s legal in TN, and I get through a pharmacy without the need for a prescription). It does help with the pain, but still doesn’t take it away.

      My mother has MS. There is history of Parkinson’s in my family. I just don’t know. Hopefully, today’s appointment at Vanderbilt, will lead to some good things. Am I in the same boat as anyone else?

    • B
      October 4, 2018 at 12:06 am

      So how did the appointment go?

      • October 4, 2018 at 2:02 pm

        So, after seeing the neurologist and going through another battery of blood work, I was diagnosed with Idiopathic Progressive Polyneuropathy.

        After seeing that neurologist, I had an appointment with a rheumatologist, which is a specialist type I had never visited. She says, that I have all the markers for a fibromyalgia diagnosis. I did a pressure point test, etcetera, and scored on the high side. However, because I have the neuropathy, she tells me that it’s hard to see where the neuropathy ends and the fibromyalgia begins. She recommends exercise, and some other stress relieving measures.

        I’m already on gabapentin and Flexeril, so I am pretty much taking everything I possibly can. I supplement with CBD oil, which does help in addition, but at this juncture it seems I am where I’m going to be.

        The pain I am left with, after all the medicine I take, is still very debilitating. And any activity I partake in, makes it worse. However, sitting still too much, makes me stiff and makes me hurt as well. The whole situation is pretty depressing, and is compounded by the struggles I am facing with getting Social Security disability and winning my long term disability insurance case, which are both taking forever. So, my wife and I are pretty broke on top of everything. However, I do my best to keep a positive attitude, and always tell myself and others who asked, that it could always be worse.

        My rheumatologist tells me, that if I can get to a Mayo Clinic, perhaps I can get more definitive answers on what is causing all this. But, I live in Tennessee and because of my financial situation, getting to one of these Mayo Clinic locations is going to be quite the challenge. On top of this, the cold makes me hurt even worse, and makes it nearly impossible to function. So, I’m going to try different Avenues to see if we can get help moving to Florida, somehow. We’ll see how that goes and just take it one day at a time.

    • B
      October 4, 2018 at 2:54 pm

      Sorry to hear that you’re having such a difficult time. What was their thinking in ruling out CIDP?