Exacerbations, Limbo and Experiences, help pls.

[Sidesteps]

Hi all, I am sort of new to this forum but posted a bit last winter when I suspected my symptoms were MS related. I am currently in limbo but had confirmation this week that my VEP was abnormal. Confirmation it was what the doctor thought, optic neuritis. I should hear more for the doctor this week.

I started with muscle twitching last Spring that progressively became worse. I was concerned but waited to address it with my physical after a few months experiencing it.  I thought it was stress that was manifesting itself in a strange way - delayed - as I was widowed 5 years ago. I had been under stress so I thought "Oh, my body must be tapped out and this is it's way of letting me know." lol ~

At some point, I noticed a two week period where I struggled with swallowing and a strange all over body buzzing. I really had to pay attention to how I ate and the buzzing was just 'odd."  I rescheduled an appt. requesting a Neurologist. My primary opted to run blood work and try vitamin supplements which seemed to help the buzzing diminish but really it just changed to muscle spasms and a stabbing feeling.

Long story short --- I quickly diminished and felt sick for nearly 8 weeks. I had a TON of weird symptoms. Balance issues (positive eye jerking, tremor's, Rhombergs, Raynaud's, Cognitive impairment, sensory issues with my burning, stabbing, cold sensations all over my body, etc.) I saw several doctor's in that time frame all saying they can see issues. I started with CT scans, MRI's and after five months of waiting, finally a VEP.  The technician indicated it was abnormal and I’m waiting to hear from my doctor about the next step.  (He sort of gave me a plan in my previous appt.)  I feel some relief that I know I wasn't imaging my illness but now I move into limbo. (I think that's a fair assessment?)

I haven't been well since I was at my worst BUT I am better than I was. I still have all over muscle twitches, jerking and other sensations. My arms fall asleep constantly at night when I sleep. I feel worse under any stress - physical or emotional. Hormones seem to affect me pretty significantly as well. (I started thinking my issues were hormone related.)

My double vision from the optic neuritis continues to be bothersome. It is a huge issue for me. It throws everything I'm looking "off."  I still have residual pains in the opposite eye. (I think from the straining to compensate for the other eye.) I get headaches more frequently. I haven't tried working out because the vision impairment bothers me. I am concerned I can’t tolerate working out again. I don’t think there is anything they can do to help me for this except give it time to heal. 

Mostly, I haven't been feeling well this last week. I have been nauseous a lot again. Today, I'm getting more stabbing pains, sensations that my right arm/leg was sitting on an ice block or felt like it was dipped in cold water. Wet. I have had tremor's again and a vibration feeling too. I experienced that a lot before.  I also struggled regulating my body temperature during my worse and I had that again today. I feel like my cognitive abilities aren't as strong – I’m missing words again and making strange typing errors. I'm SOOO tired. I could have gone right back to bed this morning after sleeping 9 hours. I am concerned about all this but I also started my cycle which seems to exacerbate my symptoms too. I plan to discuss all this with the Neuro when he calls me this week. I wonder if I am in the middle of another exacerbation? I am really trying hard NOT to focus on all this but how can it be ignored.

The doctor indicated that because my MRI did not reflect any lesions (T1.5 weighted MRI) that I was in a category that gave me a really good chance to not have another "attack" for 15 years.  Something doesn't make sense to me since I feel so many residual and current issues.  I am wondering from all your experience here; do people who have residual issues like this...  do they usually recover and make it 15 years? I feel like I'm on the verge every month of getting ill again. I just don't feel like I'm  getting “better.” Is that to be expected under these circumstances.

HELP! :)

[Sidesteps]

I lucked out and did schedule a second opinion with the leading MS Research facility director. That is who ordered the VEP. He also ruled out Lyme, Lupus and Sarcoid. I did see another Neuro prior and he did an EEG, EMG and he was the one that ordered the CT scans and MRI.

My continued care will be with the MS specialist. He did say he would start me on MRI followups with a positive for optic neuritis.

I am frustrated but mostly because my vision is super bothersome and I'm having a bad week. :(

[HVAC]

I hear your frustration. MS is a diagnosis of excluding all other possibilities and there are many.  They go by something called the MC Donald Criteria which is complicated. The health pages at the upper right have a lot of information. You might look at past posts for the updated MCDonald Criteria.

The deal is it is not MS until a Neurologist decides it is. They usually follow you every six months to see changes. If you are not seeing a MS Specialist you might want to. It is sometimes hard to find one and it is the lottery for getting in. Sometimes you get an appointment quickly due to a cancellation.

There is nothing wrong with a 1.5 MRI as long as they have good software.

Some people are diagnosed quickly some slowly. All my tests were abnormal from the beginning and I had had symptoms my whole life and yet it took years for a diagnosis. Many Neurologists said you will be diagnosed with MS some day and yet none of them would diagnosed it. I did not understand this until I found out this is how the diagnosis works. Others are diagnosed with in days.

Limbo really is nerve racking. I understand your fear and frustration. Many of us have been there.

Alex