hi again this too is to quix or who ever wants to say something i have also had my legs or my body jerking at night.. i forgot to mention that.. sorry thanks everyone great website
Hello This is too Quixotic.
I know just how you feel when it comes to the doctor saying well you dont have any lesions so no MS. I have had my neruo tell me o it is just hot flashes. here are my symptoms started all march of 2006 first started when i would be out in the heat tingling in my hands, dizziness. then this started one night burning in my feet and buzzing vibrations then i went to my room to go to bed and the room started spinning like i had been drunk. i was scared. so i had only problems with tingling that would come and go i cant take the heat makes me worse. then back in late in 2006 i started having dizziness bad again so my regular doc has already ran a bunch of test ruling everything out. back in jan of 2007 i started having short term memory loss and severe dizziness,burning in my feet and tingling in my hands. so i had a new neruo only for him to diagnose me with cognitive dysfunction and pararthesis. i go back to him for a check up not realizing i has saw his partener he comes in my room and says i see you saw my partnener he said to me no lesions no ms so here i am left hanging and i dont know what to do.. i have had problems with shock problems in my neck. problems with the muscles in my legs making it hard to walk. and only a couple of times problems with my foot dragging. my regular doctor told me that sometimes patients with ms never have any lesions he has told the neruos to do spinal tap he said it is ms we just need to prove it.. some doctors can make you feel stupid when you are trying to tell them what is going on i mean it is our bodies i have read enough to know that my doctor is right it is ms its said when we are the ones suffering here. please feel free to contact me at ***@****
Hi : i'm sorry your going through this long road to diagnosis. I was stricken last yr w sever weaknes son rt side , arm, and mainly sever ehead pressure, i have posted here before , they thought it was anxiety then neuro found the dreaded spots, two on each side of brain w mass affect. He said that a neoplasm couldn;t be ruled out/ I also had severe head pain and sharp piercing pain , like daggers and stroke like symptosm in my jaw, it was terrible. Then suddenly last Jan they got better the symptoms, i got this lkast July of 06 , 5 months after July 06 anothe rMRI of brainw a sdone, and showed spots both less prominent , he said that the a brain tumor is ruled out now. I still get a weird feeling in my throat area like i cannot swallow or its feelings like my throat is paralyzed. This comes and goes. I ams cared when i get these odd things.. I wa swondering of anyone has the throat thing. I know what anxiety is and its not that, its a strange.. Going to MS specialist in Aug .. Very costly and long wait, they dont want to do the lumbar unless necessary /. My heart rate has also increased since all this head pressure started .. I understand how you feell, all.. This came on so suddenly i dont drink anymore as i loved it, but feel it may complicat ethinsg, very hard to do that. Peace K
Thanks for the info, my neighbor has had MS for 13 yrs, and is on Betaseron. She complains alot about flu-like symptoms, it's encouraging to hear about other drugs, that don't make you feel "like ****" all the time........I just assumed all the drugs were basically the same. I read about the latest drug out, starts with a "T" ...can't remember the name, but it's an I.V. that is administered once a month......I think is still in clinical trials??? it sounds intriguing as for as dosage, but it has so many side-effects or possible contra-indications, that I don't really think it would be a drug I would choose.
Even though I haven't been diagnosed as having MS yet, I thought it would be a good idea to read-up on the subject and prepare for it........just in case.
Again..I can't thank you enough for being kind enough to share and give advice!
Take Care, Mel
Thank you all for your posts.
Mel - My doctor was up-front about the meds. He spent an hour going over the research with me. He also revealed that a good deal of the funding for his research comes from Biogen Idec (makers of Avonex). This was no surprise. Most researchers have some connection to a pharmaceutical company.
The interesting thing about the discussion we had was not only about frequency of injection, the dose of injection and the side effect profile of the 3 interferon drugs and of Copaxaone, but he also explained in detail the subtleties of the effects of neutralizing antibodies. The drugs can be seen as a sort of ladder or stair-step of increasing dose, increasing incidence of side effects and increasing incidence of the formation of neutralizing antibodies which render the drug ineffective. If you start high on the ladder, say Copaxone, if the drug becomes ineffective due to antibodies, the other drugs are also often ineffective, thus your options are more limited. I followed it all the time, but can't remember all the details. I verified what he said on my own and he gave me a month to research for myself. In doing so, his reasoning seemed sound for starting with Avonex, so when I saw him next I agreed to it.
What I saw in this neurologist was a man of compassion, integrity and incredible brilliance. I knew that he understood more than I could hope to and I decided to listen to him. I can usually tell when someone is BS'ing me. So far (12 days into the injections) - weekly in my case - it seems that I will be getting off fairly easy in the side effect department. I have had diffuse myalgias and an increase in my spasticity lasting about a day. It is nothing like having the flu. A couple mild chills, but in all nothing I can't handle. The stats are good that these will abate after a few months, but even if they don't, it's tolerable.
I've read posts from people describing what their physician has told them and I don't think they truly were given balanced info. In the end, I'm not sure it's important. Avonex has the longest history and I'm comfortable.
Quix
Just wanted to post to wish you well. I had my first MRI ever yesterday and am awaiting the results. But the technician said "I shouldn't tell your this but it doesn't look like MS to me". It felt good to hear, but am still waiting to hear an official answer from my doctor. This board is wonderful to read about others who are struggling and fighting their ailments. Good luck to you!
Very interesting!
I can't believe the nerve of your 1st Neuro.
He sounds like a total jerk!
I am very fortunate to have a very nice, compassionate Dr. who seems to genuinely care about his patients...........although I must admit at first I thought I was getting the run-around....
only because I wasn't diagnosed on my initial visit..ha ha, boy have I learned alot! (I actually was keeping my guard up, thinking when I tell all my symptoms,"this guy is gonna think I'm a nut!"
I actually asked him if he thought I was goin g crazy, and he said "NO, I believe you, it's just that it may be too early for it to show up in tests".
I gotta tell you when he said that, a load was lifted off me!
I now realize he is doing his best to try and figure things out, especially given the bizarre list of non-specific symptoms I have.
Neurology can be very tricky, lots of diseases that mimic and masquerade as one another. It's basically a process of elimination.
I'm so glad to hear your story, it helps me realize that the rest of us will hopefully hear something soon.
One question concerning MS drugs......Did the Dr. immediately put you on Avonex, or did he tell you about each drug, and let you make the decision as to which one you wanted to take?
I hope that doesn't sound like a stupid question, but I've read that there are
several drugs that basically do the same thing, only they have different freqencies, as far as weekly number of injections.
Take Care!
Mel
Amazing - reading your story has brought much hope to many soon-to-be diagnosed MS suffers. Nothing like hearing it straight from the horse's mouth. When you are feeling strong and up to it, please could you also respond to the posts on the MS site, they could certainly benefit from your knowledge and experience. Although you don't get to answer all the posts (and I can now understand why) - reading your answers have brought some hope to me personally (I have printed a copy to keep, in case it takes this many years for someone to come up with a diagnosis). Keep us posted - you have a lot of readers riding on your story. Take care and keep up the courage.
I don't know you but from reading your posts and subsequent advice to others while your ill yourself is valiant in my opinion. I hope that you know how much people here appreciate you ...I've seen it in postings, so please hang in there and just respond or add when you're up to it.
You're so brave!
NaniKai