I started getting worse with tremors, vision and bladder problems, no feeling in finger tips and toes, my muscles have gone all lumpy and there is no elasticity in them, they are twitchy mostly on my back, shoulder, buttocks or legs, i am forever pulling my back and chest muscles just by coughing, turning or bending to quickly.
My vision goes with bright sunlight, looking down too long or chewing a steak ( weird or what)
I have choked on my own saliva, even in my sleep (that is scary) if i have coughing bout even my chest muscles tremor.
I get days when food wont go down,or my bowel wont work (even though i want to go)
I saw a Neurologist in 2002 and he said i didnt have MS but my urologist said he thought it was MS,
My Dr says lets see what progresses, its okay for him to say that, hes not the one having all these different problems and saying nothing to reassure me that i am okay.
All i am using is oxybutaline patches for the bladder which is giving me palpatations, and ringing ears,
the tablet form closed my stomach and bowel and i was in agony, it says not to give to people with muscle problems, and can affect the gut and bowel ( what is wrong with these people)
I cannot take stron pain killers as it makes me sick (Acid reflux) I was on garbapentin, i also had bad side effects with them, so i am not taking anything apart from paracetamol and a heat pad for the painful areas and ranitadine for acid reflux.
Can someone please tell me what it is as i am not convinced it is Fibromyalgia.
To be sure what this is, you need to go to your doctor and seek for some tests to be done. That is the only way that you can be sure what is your issue exactly. You also need to know that there is no test for fibromyalgia, so don't be surprised if your doctor wants to do a bunch of tests. It has to happen because your doctor must rely solely on your group of symptoms to make a diagnosis. There is no other way. I know that it is hard, that no one likes going from doctor to another, but it is the only way. For example, in the American College of Rheumatology guidelines for diagnosing fibromyalgia, one of the criteria is a widespread pain throughout your body for at least three months. Don't worry, there is also a fibromyalgia pain relief that your doctor can prescribe in case if you have really huge pain. It helps!
The neuro ran an MRI of my brain and found "white spots". He is not quickly diagnosing MS or mini strokes but has lead me to believe it may be MS. I have to go for more tests next week.
I have been through hell for about 8yrs suffering from some of the symptoms you mentioned. I have had surgery on my jaw, ACDF (neck surgery), PT four times and a stack of medical records about 8 inches thick. I have underwent more test than you can imagine. Of course, no one ever ordered a brain MRI till this doctor). No one can seem to find out what my problem is.
One thing for sure my muscle and weakness issues continue spreading throughout my body. Like you I'm afraid. If it is something that could be contained or slowed down with medicines I wish they would make a diagnosis and treat me. I'm 48 and feel 80!
As for you...I would definitely get checked for MS. My first test was a brain MRI (showed the spots on my brain stem). Your symptoms are there but it could also be something else. I think you should have it checked out if for nothing else to put your mind at ease.
I am suppose to start taking garbapentin. Can you tell me what issues you had with it? I'm sort of paranoid because when my father took it for back pain he started doing crazy things and had to stop taking it.
Best of luck.
Thanks for your reply,
I had an mri in 2002 and they said that it was fine, but things have progressively got worse since then, meaning bladder probs etc.
As for the garbapentin i had liver pain all the time i took it, and you have to keep having liver checks done every so often as they affect the liver.
It also gave me suicidal thoughts and that is why i came off them. but that doesnt mean to say they would affect you that way.
You cant just stop taking them, you have to do it slowly.
My thoughts are with you xx