I'm baaack

[Tigerlilly81]

Hi Everyone,

After a few visits with the Neurologists nurse practitioner my PCP decided he was not happy with this neurologists office. He is not convinced I do not have MS and the neurologist office has not explained some of the findings such as my elevated spinal fluid protein, ataxia and spasticity and muscle fasciculations to his satisfaction. In fact they have not explained anything. He has sent me to a new neurologist that my PCP says will personally see me without dumping me on to a nurse practitioner.

However, since about June I have improved or slowed or something. I have not had any hearing loss and vision issues in a while. My cognition has greatly improved and I feel almost back to normal. I am back to driving and got a job.

Unfortunately I have been left with things that may never go away. Terrible and sometimes painful, crushing sensations in my torso from just above my naval up to my neck. It happens if I get too hot "no more hot showers or working outside in the heat", stressed or stay sitting for too long or if my jeans are too tight. I rarely go more than a few days without it happening. Sometimes it lasts a few minutes and sometimes it lasts for hours.

Muscle spasticity and twitching that are visible and when it happens to my face it can be embarrassing, but I do get it all over my body, even the bottoms of my feet. Literally feels like I have a TENS unit on.

Intermittent episodes of altered sensations.

I am not an any medications anymore so that's nice

I have noticed that require good sleep all the time. If I practice good sleeping habits I feel so much better and my symptoms are manageable.

I also eat clean. Fresh, whole, not processed and cut out red meat and pop.

I hope you all are having a good holiday season

[greaterexp]

I’m so glad you’re seeing another neurologist! Keep us posted!

[RoseySawyer]

I hope you start getting good sleep. Take vitamins as well. 🤗☺️♥️🌹

[Tigerlilly81 in reply to RoseySawyer]

Oh I am now lol. I stay off the screens after 5pm and make sure I get to bed early now.

[goatgal]

Thank goodness for a concerned and competent PCP! It makes such a significant difference to have an ally in your quest for diagnosis.

[mrsmike9]

So glad you are feeling better! And no meds??? I can't remember anymore when I took nothing. Lucky you! Stay well and in touch!

[Tigerlilly81 in reply to mrsmike9]

I have been offered things for my symptoms but I figured that my symptoms are not dangerous, and most of the drugs they were wanting me to take can cause dependency and withdrawal and did nothing for my symptoms. And I already went through that with Ativan and will never take another benzo or Z drug ever again.

[mrsmike9 in reply to Tigerlilly81]

Smart. None of what I am on causes dependence, thank goodness. But I'm on something like 9 meds. Ugh.

[Tigerlilly81 in reply to mrsmike9]

Oh man I would not even be able to keep track of that many medications

[mrsmike9 in reply to Tigerlilly81]

I used to do just fine until my memory starting screwing things up for me. Now I have them in a pill sorter.

[MarkUpnorth]

Only 9 drugs mrsmike9buffering? Yeah, I was on a whole lot more. Because, this drug helped that, but also did this and that. I'm on nothing for years now, and doing the best I've done in many years. BUT, clean eating is a must!

[rjoneslaw]

its good ur seeing another neuro