I can certainly understand how frustrated you are! I'm in a very similar situation as you. I've been having many problems for at least 6 years, although I can look back over the decades (I'm 53) and see episodes I've had, but never reported to the doctor. I was always one who rarely went to the doctor.
I was diagnosed with Hashimoto's Thyroiditis 20 years ago and Fibro about 10 years ago. I've had MRIs that showed 2 non enhanced lesions, one on the corpus callosum and another "punctate foci" in the right parietal region. My symptoms just continue to worsen and now is affecting my walking, although not all the time. Also, the weakness in my arms is incredible and I have tremors almost all the time. The tingling, numbness, dizziness, etc....I could go on, but don't really want to.
My point is that I TOTALLY understand how you feel! I may not have MS, but what the heck DO I have? I wish I had an answer for you. Limbo land is a terrible place to be.Like you, I don't want MS or any other disease. I've been trying to improve my diet and have been taking all kinds of supplements: fish oil, C, D, B complex, magnesium, calcium, and a multi. I just want to feel better!!!
I, too, have been seeing a therapist and a psychiatrist because of suggestions that I may be depressed and have anxiety. But guess what, both the doc and my counselor think my mental health has greatly improved, but the physical sx just keep worsening.
So...I lurk on this board and others trying to figure out what I should do or where I should go to get help. At least I see there are other folks out there like me, and like you. That is somewhat comforting because I'd probably really think I was nuts if I couldn't read about others and their struggles!
I'm sending (((((((((BIG HUGS)))))))))) your way. I know you feel terrible but you are NOT ALONE!
Josie
A big hello and welcome to you!
And, to you to Josie!
Did the Dr. say your increase in lesion load is from fibro?
I've got more to say, but want to read this again, say hello quickly, and will get back w/you...
Thanks for joining us! I'm Shelly, a co-community leader here and I'm sure many will have things to weigh in here. I look forward to getting to know you both better.
ttys,
-Shelly
Oh, I just have to say that I SO don't like how the "radiologist" decided to "suggest" when you should get a repeat MRI!!!!!! That is up to your Dr.
AND, this doesn't sound like a fibro workup to me!
AND,....ok, I'm sorry....LOL I don't want to give you the wrong impression of me when you just joined. I'm not hollaring at you or anything. I think our members will have a lot to say about what you have going on so far
Have you had a spinal MRI?
-Shelly
LOL, Thanks for the responses. And nah, I'm easy going. I've been posting little bits here so I'm familiar with the situation.
No spinal MRI yet. I'm curious to see how my relationship will be with my new neuro. I didn't DARE suggest or ask a fricken thing to the old one. He'd blow a gasket. So I just tried to provide him with as much info and asked leading questions. He wasn't overly helpful and was very challenged by any patient that was self-educating. His word was GOD and you better believe it baby. He even distained what my GP's had told me as 'them not knowing what they were talking about'.
IF I can get a decent relationship with my new neuro I'm gonna ask him for another MRI in the future of brain and spine with contrast. He's supposed to be a really awesome kind guy. :)
My old neuro didn't even look at my mri until I was in office and then scrolled through until he found the little arrowed spots that the radiologist pointed out. 3 minutes TOPS looking at it while he explained how it didn't look like MS.
Now...in the end here I'm really not overly chasing that diagnosis. I'm open minded. I want them to look further into things like mycoplasma, ricosetta etc...I've tested neg for lyme but our test is just the elisa which I understand ***** butt.
As well I'm perfectly willing to go seek a psche evaluation...I've seen therapists over the years to deal with various things, have a looong history of depression but have learned how to manage things pretty well now. I have continued with the therapy because this is a lot to carry on my plate and I want to make sure that my mental health is at it's best. Our body is an entire big picture - you have to look after all the bits of it. LOL
I've changed my diet, take several vitamin and mineral supplements, see a naturopath, do stretching every day - gentle exercise when I can manage. I'm very blessed to have a job I can do from home, or I would have lost any other 'regular' job. Still...even with that...sometimes I wonder if I can manage. I'm good for, on average, 2-3 hours of moderate activity a day. Push beyond that and I'm suffering more the next day. I end up dragging my left leg behind me like a dead thing and I'm simply exausted.
Ah well. Onwards goes the journey. When I stared this I was freaked and wanted answers yesterday! Now I realize we're gonna have to plunk along for a while. I just don't want to lose anymore of my mobility as I'm sure everyone can relate to. Even at this status I wonder about pursuing a bit of help as far as disability - but my doctor is very against that just because he doesn't want me to put myself into that catagory as he worries that I'll 'give up' and he wants me to be as happy and healthy as I can be. He's a fantastic doctor and I really love him...but he's not in this body either. LOL
Thanks so much for your time. I know that was a lot to wade through.