SCARED! Hopefully not alone.

[disillusioned2014]

I woke up this AM with no feeling in my hands, numbness and tingling. Took 6 hours to go away. This is not like the carpel tunnel I had before. This feels completely different. All my figures are involved. it doesn't bother me when I am asleep. Same as the leg pain. I am scared half to death to lose anymore feeling in my limbs. What happens the longer you go without a DX of MS and you really have it? I am trying to hang on, I really am. I am not on all the medications I was on that doctors have had me on for many years, (seizure meds) I have decreased my stress and been doing an amazing job in my life at controlling the stress and well everything very well. maintaining stress very well. I am at a loss. So now I am here with you all again. Scared and hopefully not alone.

disillusioned2014

[disillusioned2014]

Ok I think what was trying to be said, heard, or maybe or not implied on this posted maybe taken out of context. This is again a forum and things can be misinturputed. I know you are trying to help and I am grateful. Thank you

[supermum_ms]

"So get the drugs and shut up? Is that what i am hearing?"

Absolutely NOT what I said or implied or even was thinking, nothing hidden between the lines, NOTHING even remotely like that was in 'my' head whilst writing!

MSers take medication to treat different sx's, as well as take medication that treats the disease.............

My only intent was with the thoughts of support!

[disillusioned2014]

So get the drugs and shut up? Is that what i am hearing? If so say that. I am a direct person most times when I can understand what is being said.

[disillusioned2014]

I do have double vision that is my depends vision, exercise makes my Sx worse,especially in the hot, humid summers.  I have positive rom bergs also among others that I just didn't put in my initial post, regardless I think my point was I wasn't getting the proper care or it was substandard which other doctors confirm and then point back to my psych issues.

Yes it could be related to many other things other than MS but let's not take out that it could be MS. Believe me I do not want MS just an answer. Weather you think it causes me distress or what have you and I need to open minded ok nonetheless i am less stressed these days than I ever have been and I think at times posts get read into more than they need to be. But that's just my 2 cents.  Thanks disillusioned2014

[supermum_ms]

grrrrrrrrrrrr pet peeve of mine is people thinking they'll just WAIT because they will either get better or worse, ahhhhhhh no try flipping that though to...........I may not know exactly what is causing these sx's but I can try to get help today with treating these sx's more appropriately, so I can better my tomorrows!

No matter what the dx, it still wont change what you experience, even if it actually was MS the disease modifying drugs (DMD's) do nothing for the sx's, sx's can be treated regardless of cause, and that in my opinion is definitely worth fighting for.    

cheers...........JJ

PS. I wrote that to you back in Feb :D

[disillusioned2014]

I had to laugh when I saw this after I had just posted med effects minic MS? Interesting. I hear ya when you say be open minded and I am hence the other post and my bi-polar is just fine. Treated well, very we'll. I have good docs in that area. No worries on that. I'm very covered. I am not activity looking for a Dx of MS. I don't talk about it with professionals any longer I have left that battle dead in the water. Not worth the fight. I will just wait until I either get worse or get better but I can still educate myself and take care of me while I wait and I can try and help others that want help also. Thanks

Disillusioned2014

[Chiro19]

You're not alone I'm in the same boat..awaiting a spinal tap with multiple bilateral lesions in the deep white matter. Neurotin is easing the parathesia, numbness and nerve pain. Lately I take one day at a time and relish my tine and appreciate what I can do at this point. Stay strong!!

[supermum_ms]

I am really sorry your still no closer to knowing for sure, what is causing you all these issues but you have to admit, you do have a lot of complicated issues going on, and you need to keep in your minds eye, that what you experience  may be completely unrelated to MS.

I wrote this to you a few weeks ago.......

"Your frustration is coming across very clearly but please do not let your frustration, lead you into believing more than you know to be true, because it will only cause you more frustration when you hear something you don't agree with and help cement your beliefs when you hear something that only supports it.........be open minded!

Basic truths...

MS has quite a lot of mimics, and because of the vast number of mimics, statistically a person is more likely to be diagnosed with a mimic, than they are to be dx with MS. Mimic's cover a broad range, there are many sx's listed as MS sx's but they are not exclusive to MS. Migraines, psychological conditions, central nervous system delivered and adverse reactions to mental health medications in general, as well as TBI's that you've mentioned, all have the potential to mimic MS.  

There are certain sx's and clinical signs that are more primary sx's of neurological conditions like MS eg. Optic Neuritis, Nystagmus, Diplopia, Uhthoff's phenomenon, unilateral hyperreflexia, Clonus, Babinski reflex sign, Romberg sign, Ataxia etc.

But the sx's you've mentioned are non-specific.. 'pain, headaches, paresthesia/dysesthesia, daytime fatigue, vision (depends), bladder, swallowing, vertigo/balance and cognitive issues' would all be more secondary sx's, because they don't particularly suggest neurological as the most likely cause, and could potentially be caused by many things.

Unfortunately, many mental health medications do cause adverse side effects so whilst a medication maybe an effective M/H treatment, it can cause totally new issues. Depending on the class of drug, quite a few are prescribed off label for neurological conditions eg nerve pain, so if a M/H drug can effectively tame some neurologically caused sx's, why wouldn't it have the potential to create the sx's too......."

Please open minded!

I am concerned that your bipolar is being put on the back burner whilst you are focusing on MS, please don't be complacent with your anxiety and depression levels....................don't let it get away from you and fall into the bipolar black hole of depression! Please!

Hugs............JJ  

[disillusioned2014]

Thank you. Today was better but I have uncontrollable crying and I have no idea why. Ugh. Did your numbness go away in the end at least? For me though I am not being treated with any meds for my Sx. Sad but true. I suffer though the pain and scared stuff alone and with those who write on here...

sad today I guess from the way my body, and mind seem to be responding to whatever is happening to my body.

disillusioned2014

[arob2013]

The exact same thing happened to me two weeks ago which began my journey of diagnosing MS. I have no history of numbness, etc. so I was quick scared as well. Went to the ER and they did an MRI that ruled out MS, oh wait no it didn't, oh wait yes it did, waittttt no... No it didn't. (4 different doctors. I only had a few 2 CM sized lesions)

I was admitted for observation and had a spinal tap done. I do in today for all of the results.

Don't know how this helps, but I share your worry and will keep you posted on what the Dr suggests it to be.

[kwarendorf]

To varying degrees we have all been where you are. There is an understandable level of anxiety surrounding undiagnosed neurological symptoms.

As to MS and delayed diagnosing, it's not really a big deal. MS is a slow moving disease. Nothing about MS happens quickly. If it takes another 6-12 months to get an MS diagnosis, very little of the big picture will change. It will not likely alter the choices for treatment. WHile waiting for a DX you should be able to pursue relief of individual symptoms.

For me, I had MS for 20 years before I was diagnosed. I hadn't been looking for a DX for those 20 years, but when I did start looking we were able to date the first relapse to 20 years prior. I'm doing just fine :-)

Kyle