hello, sorry to crash this board. I dont have MS, or at least I never thought I did until now. I would like your opinions please so what is wrong with me. I was diagnosed with CFS 6 years ago after years of having extreme fatigue and many other symptoms on and off. I was 24 then and it probably all started around age 18. I was fobbed off with antidepresants for a long time which never worked. But no matter how many times I protested that I was unhappy because I felt ill and not ill because I was unhappy I was just ignored. It wasnt until I was 24 that I was finally dignosed with CFS and someone finally beleived I was not in depresion. I was actually feeling a little better by the time a consulatant gave me a diganosis and he did say that it was possible it would pass and wouldn't experience it again or it could come back. When I got pregnant it was almost like it just disapeared and I really beleived I was done with it all and would never feel like that again. Well it did come back and has come back with a vengance. After a long break of about 4 years without struggling I have been having a horrible 6 months. Because I am very tired right now I am going to steal the question I asked on yahoo answers last night because there is just too much to type and I keep hitting the wrong keys.
This is what I asked: I need some help, I feel so unwell and its taking over my life. I am always feeling like I'm coming down with something and have had a burning headache for a few months. I was diagnosed with CFS about 6 years ago. But after a while I felt a lot better and went 4 years feeling fine apart from the fact that I am always stiff. Along with the uncontrollable drowsiness when the CFS is playing up I get sleep paralysys, dizzyness, headaches, I cant speak properly, I get forgetfull and my hands shake. I'm so clumsy, things just fall through my fingers. I drop everything on the floor. My whole body aches and I am so stiff. I feel sick in the mornings and it takes me hours to wake up. My mind is foggy and I get so forgetfull.
But lately I have been going through a particually bad patch. I have had a burning headache for almost 3 months, I feel dizzy a lot and sick and my head feels like its burning. The clumsyness is back and I feel like an old lady because I am so stiff, achey and uncomfortable. I have never been so forgetfull and I feel like I am living in a bubble. Like I am still sleeping even when I'm awake. I have had sleep tests in the past and even an MRI. I never thougt about MS before until I looked on a website because of a friend having a problem with her eye and it popped up on google so I had a read. Instead of finding an answer for her questions I found answers for mine. It seems to make so much sense.
Here is a list of things I experience or have experienced in past episodes of feeling this way. It comes and goes. I went 4 years feeling fine and now its back.
Extreme fatigue
severe burning headaches or migraines
dizziness
nausea
problems with spacial awareness
joint pain and stiffness
pins and needles in arms and legs.
my hands sometimes feel funny, sometimes numb
palpitations
cramps in my legs and ankles (but only when I'm cold)
tight chest (only when I'm cold)
clumsiness, things just fall through my hands and I trip over myself alot
forgetfull
memory loss
have trouble forming sentences and finding words
tinitus, worse than usual (not sure if its a symptom of ms?)
altered sense of smell, although taste is normal
restless leg syndrome, which annoys hubby but doesnt bother me
mood swings (probably because of my 3 month headache)
I have perfect vision because of laser eye treatment so no visual symptoms except i see a little black dot in my vision which they said was a floater.
I feel so fed up of feeling this way. I'm sure the doctor thinks I'm a hypechondriac or something. Is this all just CFS or could it be MS? The reason that I have started thinking it could be this is because I read about it causing lesions on the brain. I had an MRI when they diagnosed CFS and there was 1 lesion there but according to what I've read they would need to see 2 or more for a diagnosis. They didnt seem concerned by the lesion at the time.
Please give me your opinions. should I go to the doctor and demand some tests? Oh and the scariest thing I have had since I started feeling ill again is that a few weeks ago I went to change gear and my arm didnt move. That usualy only happens if the 1st few seconds after I wake. When it did move it was so heavy.
19 hours ago - 3 days left to answer.
Additional Details
forgot to add, had blood tests for diabetes, heliobactor pylori (because of the nausea) and usualy FBCs and stuff. All normal. Would this mean I can forget about the MS and stop being silly?
19 hours ago
sorry, also should have said have already gone down the vitamine b route, no problems there but I took suplements anyway and my pee turned bright yellow. the packaging said thats a sign of having too much so i stopped taking them
so, thats my problem. I did infact this morning take a list of everything I have been experiencing to the doctor and he refered me to a nurologist without me even having to ask. I didnt ask him about MS as I didnt want to seem like a googler! I have googled things before but this is the only thing that really seems to fit!
Please someone tell me if I am over reating or am I right to have concerns?
help please?
Hi tiredandworried,
I was just diagnosed myself so I am not an expert, but I don't think you are over reacting. When it comes to your health, it's better to be safe than sorry.
The thing about MS is that a lot of the symptoms of MS (and that you listed) can be attributed to other things, so its hard to say what it is. I would start with the neurologist and see what they say...if they order an MRI ask them if there are any specific to MS and be sure they do some with AND without contrast. My first MRI's came back normal (and the doctor told me I had generalized anxiety disorder and was making it up!) and then the doctor ordered a special MS MRI with contrast and that is the only one that showed my lesions.
Even after you get the results back from this doctor you go see, don't be afraid to get a second opinion, especially if they say you have MS. I started with a regular neuro, then went to an MS specialist at UCLA to confirm what he said, and then switched to an MS specialist within my medical group for regular treatment...so that is 3 docs to me.
I wish you the best of luck and hope they can figure out what is happening to you. I think not knowing can be the worst part.
I was just diagnosed myself so I am not an expert, but I don't think you are over reacting. When it comes to your health, it's better to be safe than sorry.
The thing about MS is that a lot of the symptoms of MS (and that you listed) can be attributed to other things, so its hard to say what it is. I would start with the neurologist and see what they say...if they order an MRI ask them if there are any specific to MS and be sure they do some with AND without contrast. My first MRI's came back normal (and the doctor told me I had generalized anxiety disorder and was making it up!) and then the doctor ordered a special MS MRI with contrast and that is the only one that showed my lesions.
Even after you get the results back from this doctor you go see, don't be afraid to get a second opinion, especially if they say you have MS. I started with a regular neuro, then went to an MS specialist at UCLA to confirm what he said, and then switched to an MS specialist within my medical group for regular treatment...so that is 3 docs to me.
I wish you the best of luck and hope they can figure out what is happening to you. I think not knowing can be the worst part.