So frustrated . . .
 

I had my first set of MRIs in 2010, and just did my second set last month. Both sets completely negative for lesions or inflammation. My MS clinic doc has my diagnosis as TM (transverse myelitis) currently, even though my history is atypical for TM, as my disease is more progressive. I never have remissions, unless you count an hour or two every month or so where I actually do not notice my symptoms. My symptoms are mainly in my legs and feet, and they are getting worse. I also suffer the fog, the hug, and extreme exhaustion.

I was wondering if anyone else is living with a diagnosis but negative tests.

I was also wondering if anyone else is unable to use the standard MS meds for pain, spasms, etc. I have tried the list, and they greatly exacerbate my Crohn's symptoms and I can't use them.

I am feeling at a loss. I do stretching and meditation, but so far any attempt at real exercise is met with Crohn's issues. I feel so screwed. I will be 61 in January and the entire decade of my 50's was lost to worsening health. How do those of you with multiple issues deal from day to day? I am not sure I am up to another decade of this . . . or worse.

And for the first time in my life, my home is showing signs that someone living in it is not doing well. I need to downsize, and get rid of stuff, but am overwhelmed with the idea of even where to begin.

[dark cloud]
. . . :( . . .

Hi Lefty, so sorry about all you are going thru right now.:( Have you considered LDN (LowDoseNaltrexone)? I know they have tested and had some success in Crohns as well as ms, in studies. Go to the LowdoseNaltrexone Homepage, to see if it may be right for you. Your Neuro or PCP may script it for you.

As to another decade of this. I said the same thing, when I was 61... I made it to 72 and looking forward to another decade..:D

Good wishes..:hug:

Theres so many different treatmens for Crohn's now including worms...as for treating your legs-is it tightness? Pain?both? Have your tried cannabis? Zanaflex? Clonopin? Botox?
I wish you could get relief. Pain/spasticity of my legs & back are my main Sxs as well as cognitive problems. I don't know how people keep on going when things get worse...honestly, I gave birth to 2 of my 4 kids w/o drugs and this is so much worse-no letup...
Let us know how you're doing-and keep on bugging yr doc-you deserve relief!!:hug:

I have asked about LDN, but both my gastro and my MS doc believe they need more double-blind studies before they will recommend. Seems simple to me. :rolleyes:

Well, I go in Thursday for EMG/NCVs (repeats . . . my third time in a decade) and my first Botox. She plans to inject my calf muscles and my feet. It is getting so bad (here is how I gauge bad) that even a great movie or TV show (like Big Bang Theory) is not enough to keep me distracted anymore.

On Saturday we go to Portland for my granddaughter's first birthday (I am making her cake . . . foolish? Maybe) and I am not looking forward to the 3 hours trips down and back. Ugh, I hate riding in cars.

I will certainly report if and when I get some relief, and maybe I will even give a blow-by-blow description of the process . . . :eek: