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Hi All-

I have to have the worst luck in the world at finding a Dr. or should I say Neurologist. Heck even a PCP. So through my frequent bouts of neurological symptoms I am still at a stand still. I am on my second neurologist. The first was a sleep specialist and this one I have now I was told by my PCP was a neuromuscular specialist. So after I gave the first Neuro a list of my symptoms he felt that I should see a Neuro in a teaching or research environment to get a complete eval. and a Rheumatologist. I have seen a chiropractor, urologist, physiatrist, surgeon, orthopedist, and gastroenterologist. All of which wanted me to see a neuro because they felt that they were dealing with markers of MS and wanted me to be tested to be sure. I get care at the local VA. I have suffered from chronic constipation, had a hysterectomy because I had chronic unexplain gyno issues, cholecystectomy (unnecessarily) for random unexplained pancreatic pain, and urodynamic testing showing an unresponsive bladder, flatlined the entire test. More stuff just not enough time in the day to go over. :)

Okay back to the purpose of the rant and post. So I explain to my PCP what the first Neuro said about seeing someone in a teaching/research environment. She said well actually we have a new Neuro starting here would you mind seeing her, she is a neuromuscular specialist? I said sure no problem (getting worked up just reliving the moment).

At the appointment she asks me to give her my history. I tried but was having a brain fog. So I only could say a couple of symptoms. My laptop hard drive died 2 days before the appt so had nothing to bring in. As I was explaining she kept cutting me off saying well what's wrong with you now. So I say you asked for my history and I am trying to give you that. I am currently not really episodic right now so I only have numbness in right leg from hip to toe. So she asked about headaches I told her I also had an EEG done that showed some seizing, which has nothing to do with the other stuff but just trying to get her abreast. The 1st Neuro took me off of Topamax and put me on Lamictal and added Lyrica for pain. Told her that the Physiatrist said that I had spasticity in my right leg.

So she starts to examine me. She did the reflex stuff, yanked my arms and legs from straight to bent. I couldn't walk the next day because of the right leg pain. After that she said okay this is what I think. I don't think it's MS, but could it be MS yes. We will wait for the MRI's w/ and w/o contrast and review. Could it be MS and the MRI's come back normal yes. In that event we will need to do a spinal tap. If you aren't thinking MS that's great can you tell me what could be causing these neurological symptoms. She says I have no idea. I don't know why you have chronic spasms, weakness, and numbness. Have you ever taken baclofen or Zanaflex. I say no but the physiatrist thought I should. She says what I will do is prescribe you Tizanidine for your spasms. I will prescribe you topamax for the headaches. I only want you to go up to 50mg and we will stay at that. I say but you know I have taken Topamax before and was at 200mg, 50mg does nothing. Well that's where I want you. I say now what about for my nerve pain I was on Lyrica and also tried neurotin but it didn't help. She says I can't prescribe you both. So do you want something for the headaches or for the pain. I say I'll take something for the pain because the 50mg of Topamax will be a joke. She says well just take some B Complex and that will help with both the headaches and pain.

I say I can't believe this I am back at the beginning. I don't understand how as a Dr. you can tell someone I can't help both of your issues so choose one and we will work with that. She says well I just met you and I am going off of what you are telling me and the test. I tell her I have the records in my car from other Neuro I could give. She says well I will see you again in 3 months bring that with you then and we will review. (Huh?) My car is at the door. It will take me 30 secs to get there and back. No just bring it back in 3 months. Needless to say I went and got it and brought it back for her to read. So she said I think you should get checked for Fibromyalgia. I said that is fine and hopefully I will get a referral since Fibro is normally associated with PTSD which I have. But does Fibro cause a person to sometimes be unable to walk without assistance from a walker, limb weakness, incontinence, temporary paralysis, vision problems, muscle spasms, chronic constipation, mental fog, or falling. She says well not that I know of but I am not a Rheumatologist.

She ends with, So okay.. again I will see you in 3 months do you have any other questions. I said well no because you haven't given me adequate answers to the other questions. Ughh!!! Back to square one. Sorry so long.





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