Question for Klimas / Rey Patients

[PhoenixBurger]

So as it turns out what I might have is Neuromyotonia. Not CFS / ME.

I have been waiting nearly 6 months for my appointment with Dr. Rey, which is going to be around May 3rd. Coming up soon.

Should I still go? I realize Neuromyotonia is still considered autoimmune, but also possibly paraneoplastic / cancer related. Treatment for NMT still involves calming the immune system if cancer isnt present. Just wondering if I'm going to end up having the infamous "Doctor Conversation" i've had 100x before: Wait months to be seen, then you're in and out without an ounce of help 45 minutes later.

 

[Andrew]

Can you give more details. It could be you have that plus me/cfs. Do you have ME/CFS symptoms?

 

[PhoenixBurger]

I did at first. The whole gamut. From top to bottom. But that was just the first few weeks. As I reached month 4 it settled down. Month 4-7 all that is left is NMT symptoms - literally by the book. Its nothing like what you folks have to deal with. And I never had the "viral syndrome" really. Swollen glands and flulike symptoms lasting weeks/months. I only had (everything) very quickly during an "acute" phase then it passed. All thats left is NMT ... and im the poster child for it. Given that NMT can be post viral it makes sense.

"As a result of muscular hyperactivity patients may present with muscle cramps, stiffness, myotonia-like symptoms (slow relaxation), hyperhidrosis (excessive sweating), myokymia (quivering of a muscle), fasciculations (muscle twitching), fatigue, exercise intolerance and other related symptoms. The symptoms (especially the stiffness and fasciculations) are most prominent in the calves, legs, trunk, and sometimes the face and neck, but can also affect other body parts. NMT symptoms may fluctuate in severity and frequency. Symptoms range from mere inconvenience to debilitating (rare). At least a third of people also experience sensory symptoms."

 

[CallieAndToby]

Good question. I have seen Dr. Rey a couple of time. I kept bringing up weird symptoms and she would look at me perplexed. I was also diagnosed with an auto-immune disease called - PANDAS syndrome. I emailed her telling her but she didn't say anything. So I don't know whether or not to just continue on with my very very good neurologist who put me on valtrex RIGHT AWAY when he found out I was positive for coxsackie A and B (which can be a triggers of PANS)....................... His treatment will be different: IVIG, removal of infected tonsils, IV steroids, long term abx.........
I wonder too if it's time to move on BUT my neuro said that he's never seen this kind of fatigue or sleep problems in his other pandas patients (I have very very severe fatigue + PEM and TERRIBLE sleep problems).......... With that said, I don't know that there is anything Dr. R can do about that either - they tend to focus on immunomodulators which I was told is really bad for pandas (I can attest to this they made me so sick VIOLENTLY SICK at minuscule doses).

I wish I had an answer for you. Does your current doctor know anything about M.E./CFS? You could always ask him/her if they think that could still be an issue. My neuro knows a lot about it and said the diagnosis still stands but that all his treatments could help it (anti-virals, IVIG, etc). You definitely need to follow through with the treatment of Neuromyotonia; I personally think that a lot of us are dealing with auto-immune problems, rare or those that have not even been discovered (audio book - brain on fire).

I never wanted to settle for just M.E. b/c I knew there was much more going on that I wasn't seeing in other patients.

P.S. 45 mins seems rather generous, My max was 20 mins ........................

- C

 

[CallieAndToby]

Also, is it a big hassle for you to go? I mean monetarily and distance wise especially being sick?

It was a huge hassle for me to get down there. Perhaps if you decide to "see" her you should just do phone consult. She takes a lot more time with the phone stuff and I found it much more pleasant experience.

 

[Misfit Toy]

Callie and Toby makes a good point. Can you postpone it? I would wait to know for sure what you have.

 

[Little Bluestem]

You could contact Dr. Reys office and asked if she still wants to see you now that you think it likely that you have Neuromyotonia. How soon can you see a Neuromyotonia specialist and find out for sure?

 

[PhoenixBurger]

The Spitfire Little Bluestem CallieAndToby

Not sure how to phrase this. I'll do my best. Have seen 5 neurologists. All of them look at me like I'm an idiot. Rarely get through my 12 month story of symptoms before they tune me out. Tell me I "look fine". Tell me nothing makes sense. They look at my blood test results and see nothing abnormal. That which is abnormal (high cd8, high lymphs, positive CMV antibody, negative CMV pcr) is of no consequence to them. They hear that I'm seeing Klimas. They breathe a strange sigh of relief and say "Yeah - go see her". Not sure if they're happy for me, or relieved to pass me on to someone else.

In other words - I've spent 12 months trying to "find out for sure" what I have before Klimas/Rey and failed. There are numerous tests they could run. I could print out a book of procedures that would be scientifically accurate to check for with my symptoms. But they won't do it. Nobody will. No doctor bothers. They sooner tell me that im imagining my symptoms, than run another test. I've had all the basics, and that's as far as they'll go. Admittedly the basics are numerous. But there's countless other applicable things that could be checked for, given my clinical manifestations. But they won't do it.

I was going to approach Klimas/Rey as a CFS patient, but when I saw the Neuromyotonia page, it screamed my name. Every letter on the page describes me to the "T". There really are no specialists for Neuromyotonia that i can find. I am in Miami so Rey is just a quick 10 minute drive away. There is a neuromuscular doc my Neurologist recommended, but he has no appointments until June.

 

[Misfit Toy]

Well, then I would go to Rey. If you live that close. Why not? Unless it's financially unsuitable. But, I agree. It takes a certain kind of doctor to deal with what we have. One who likes a challenge. Best of luck. I hope it works out and some light is shed on what you may have, or have.

 

[PNR2008]

Why don't you make an appointment with the neuromuscular dr in June and still see Dr. Rey. Maybe one will be better for each disorder or if Dr. Rey can help then cancel the other apointment. One thing I've learned in 25yrs is don't put all your eggs in one basket. It just might be a good idea to have two Drs.for two difficult disorders. Take care.

 

[Marg]

The EM Papper lab at the U of Miami does the best testing of the immune system. I had pages done. My GP here said when I went to him for a lab order that no one does this here. I told him they did not have to, I would overnight it to Miami. Last I knew Peterson was sending his blood there for the immune testing.

 

[joyce.swing]

It is now the day after your appointment, PhoenixBurger. I am wondering if you went, and how the appointment. I hope you will give us an update.

 

[PhoenixBurger]

Sorry i screwed up. The appointment is the last week of May. Not first week of May. Ive been waiting so long i literally forgot. I have a mayo clinic appointment at mayo in jacksonville which I've been waiting months for as well. That is next week.

Debating whether to make the 6 hour drive or not. The more I read about Neuromyotonia the more I realize that without severe clinical manifestations that never abate, and proper EMG results (30% qualify), and show positive for voltage gated potassium channel antibodies (30% qualify), you won't get a proactive response from any doctor and be given treatment.

Doctors comprehend only reactive medicine and treatment of actual full blown disease. The obvious concept that there are levels of severity, and that early intervention (especially with suspected autoimmunity developing) can actually provide *cures* ... escapes even the most open minded of doctors. One must wait until they've got full blown disease before any steps are taken, and by that point, you're lucky to "manage your symptoms". Forget the fact that if you'd jumped on treatment 7 months into the process, you may have cured it altogether.

Here's the interesting thing though - if Rey does immune testing, and can establish that I have hyperactive/unruly immune behavior, maybe I will be given mild immunomodulator treatment anyway. So maybe I should just go in there saying I suspect I have an inflammatory immune syndrome of some sort, and would like complete immune testing.