advice, looking for something positive

[shel67]

Hello all... I've  been lurking for awhile because I'm currently in the process of  finding out if I have MS or not. I have 3 MRI's (1 for visual, 1 spine, 1 brain) for next week planned and I know that I have this. I'm pretty sure the onset was 4 1/2 years ago.  I had odd symptoms over those years at first like face twitching and numbness. It wasn't bad or disruptive (but there was one time I talked drunk  for about 6 weeks)  and they always went completely away and I was fine, "normal" but last year  with some hand tingling/slight coordination issue on my right hand, this cognitive impairment hit me and it lasted about 5 months or so. It was like I was high on a drug I could not come off of. The tingling/coordination came first and went away first, about 3  months later but eventually all symptoms (drugged feeling, lightheaded, dizzy, slight imbalance) subsided. There was some imbalance issues  left over and I chalked it up to premenopausal cuz  that's what docs said and it seem to follow a hormonal pattern. I'd say from Aug last year till late Jan this year I was doing good and felt good, not entirely like myself but close to it. I can remember the night I could just feel it all go away. My symptoms would just come on out of nowhere and go away just as suddenly out of nowhere but now, that's all changed. Since the last week of Jan I have been in a bad flare that just won't quit.

One morning I was just out the shower and all of a sudden a felt a strong feeling of numbness and tingling in both my hands that has not subsided. It has been with me 24/7 for the last 4 months. Over these 4 months other symptoms have joined in, muscle tightness in both hands, both forearms, both biceps and 2 months ago numbness in right knee, toes on both feet and tight muscles in chest, right waist. The tightness is sometimes in my neck and I feel that waxes and wains through out day  but it's always there. I have vibrations in both legs, a part of my right quad is tight and I sometimes get that shock feeling when I bend my neck and legs have it. I get clod pains in my fingers and left toes but the best is the extreme imbalance dizziness. its so, so bad.

My question is, what's going on? Am I in a flare still or is this some new progression that's never going to go away? I guess I'd like to know if this had ever happened to any of you and did it subside? what was your worse and did it go away? And why so many symptoms at once?  How can I make this stop? I know this is unpredictable and no one knows but I'd like to know if there is some hope to recovering from this current attack? Needless to day I'm crying every moment and scared and depressed. I never had a depressed day ever  but now I cant function. I need to know that things can get better. I don't know how I can live the rest of my life like this. I'm dory to bore you all. I'm looking for advice and perspective. Thank you.

[karryon55]

Hi there,

I'm can't really add much to what has already been said as I agree with what immi and Alex are suggesting with trying not to assume you know what you have wrong. Some of what you have mentioned like blocked feeling in your ears is not generally associated with MS but some other symptoms could be from a neurological condition like MS or neuropathy, APS, Migraines etc.

There are so many mimics in the neurological world and the neurologists have to rule out all mimics before dx anyone with MS so there could be some time of testing before you get any dx. If it's any consolation there are lots of people on this forum who are in limboland and have no dx yet.

I know it's easier said than done but try not to get too worried about things as this will only make your symptoms worse & I know this first hand. If you are feeling depressed then I would go and see your GP about that because it's better to deal with it earlier rather than later.

Hugs,

Karry.

[shel67]

I'm not offended. Thanks to all
.

[karryon55]

Lol you can have humour here and say $ucks as much as you like! I'm sure that shel67 won't mind either infant I'm sure she's feeling rather $ucky herself after reading what's happening with her.

Take care,

Karry.

[MShasMS]

Sorry to anyone who was offended by my last response. I thought it would be understood as laughing about the editing on my previous post not laughing at anyone. I come here for help in dealing with my new found illnesses not ever to make it worse for someone else. In the future if I ever comment again I'll keep it to simple comments,no humor.

[MShasMS]

That's $ucks, lol.

[shel67]

The nuro i saw was resident and she said based on exam my symptoms were sensory. She consulted with the head doctor and he said he wants the visual test done because even though I don't have pain in the eyes and I can see that still doesn't mean its not ON. My eyes auras without headache, floaters and sometimes light flashes out the corners and I have some blurring but glasses help. It's more of a processing stimulus effect than actual sight and I been having this clogged feeling in my ears for the last year. That's what has me confused is the amount of symptoms in having at one time. I know the nuro is looking for MS.

[MShasMS]

Lol, didn't know ***** is a bad word! I'll bet it gets edited out a lot because it is definitely the best describer for what it feels like to be diagnosed with MS.

[MShasMS]

I am very new to MS, not even close to as knowledgeable as these guys, so I'm not going to comment on that part. I will tell you that a lot of what you described does sound like transverse myelitis, which I was diagnosed with in January of this year. It usually comes on fast but it can spread over time for some people. It was only after I got in the hospital for that, that my MS diagnosis came. From all of the MRI's that were taken at the time and an LP. That's just one thing it could be but as the others said there are so many more,so try not to scare yourself unnecessarily until you have the results of a neurological exam and MRI to back it up. I like you chalked up a lot of my past things to the fact that I'm 45 and that it might be peri-menopause, I think that's the thing that ***** most about women my age is that you just don't know.

[HVAC]

I get that you are scared. Not knowing what is wrong is scary.I would not jump to thinking it will never get better until like Immisceo says you know what it is. A neurologist goes by history, symptoms, a neurological exam, MRIs, lots of blood work to rule anything else out, possibly nerve studies, and may be a lumbar puncture. The doctor will follow you over time to see changes for himself. Rarely is someone diagnosed right away. I had a positive MRI but its still took 2 years for a diagnosis.

When I first was diagnosed I worried about every symptom of MS happening to me. That was in 2009 and I have not progressed that much. Every case of MS is different. the majority of MS starts with optic neuritis.

You will have some answers soon.

Alex

[immisceo]

Have you also had a full neurological exam? Any other testing? What you describe could be many things, some of which would be more likely than MS. You won't really be in a position to know the answers to your last paragraph until you have a better idea of what you're dealing with. Hopefully that will come with the MRI results. Most people are initially diagnosed with the relapsing-remitting form of MS, in which signs and symptoms disappear entirely after a time (different with everyone).

To be honest, what you describe doesn't have me (a non-professional with MS) thinking about MS. It's too all over. The timing and pattern would be atypical. It could be many things from vitamin deficiency, spinal cord issues, circulation issues, peripheral neuropathy, etc. I sounds like you're early-ish in the process of finding answers. Try to keep an open mind. Going into any procedure or test with a pre-determined idea of what the result will be usually causes unnecessary anxiety.