writer74 wrote:Hi everyone! I'm Holly - age 39, mom to 3 kids.
I was finally diagnosed about 3 months ago. I've had symptoms since 2001, mainly cognitive problems, poor memory, bladder issues, but despite seeing multiple doctors over all those years I kept being diagnosed with "depression". Finally this year I had a horrible headache that didn't respond to any treatment for three straight months and convinced my family doc to order an MRI. The MRI showed that I have significant amounts of lesions in my brain.
I was referred to a neurologist, who ordered an additional MRI of my spinal cord and a lumbar puncture (the latter of which was the worst experience of my entire life, by far.) The spinal MRI was normal. The LP showed that I did not have the oligoclonal bands (sp?) that are typically seen in MS, but I DID have elevated protein in the fluid.
I had treatment about a month ago with IV Solu-Medrol, during which I felt absolutely amazing. My brain was clearer than it had been since my mid-twenties before I remember developing symptoms, and I was so much more alert and didn't need daily naps anymore.
Now about a month after treatment, I feel terrible again. My memory is shot, I can't hold my train of thought anymore and I am so unbelievably tired that I sleep about 10 hours at night and still need a nap every day. My hips and lower back feel like they lock in place whenever I have to stand for a length of time, which is incredibly painful.
My neuro prescribed Provigil for the fatigue, but with my co=pay it costs me $200 a month's supply. I did fill a half-month to try it and helps a little, but not enough, which is just as well because I couldn't really afford to take it on a regular basis. My neuro also said that my MS is "atypical" because given the extent of my lesions, I should be completely wheelchair-bound and yet I'm somewhat functional. She said that although my MS looks more like PPMS, she's going to code it as RRMS so my insurance will cover the disease modifying drugs. I'm not happy with her changing my diagnosis and so far I'm refusing to take the DMDs because as far as I know they typically don't work for primary-progressive. However, if what I have is primary-progressive MS, how could I have had what I think was a flare a few months ago?
I don't really know what to do next. I work at home as a writer but the fatigue and brain fog is making it extremely hard to do more work. My husband thinks I should apply for disability but I don't know if I would get it. Is it possible I can find anyone or anything that can make me more alert and functional again? The fact that I felt so good while I was on the Solu-Medrol actually makes things worse now because I know how I could feel instead. Can anything help me feel that way all the time? It feels like there is some better, healthier, more functional version of me that's out there, but I don't know how to reach her again.
writer74 wrote:So many interesting and helpful responses! I'm just starting to look into nutrition. My husband and son are both gluten-free; I believe my son is Celiac, but he feels so miserable whenever he consumes wheat that he's not willing to eat it again just to get tested. I did try giving up gluten for about 3 weeks and noticed no change in how I felt, but that doesn't mean it's not worth considering.
The insulin issue is HUGE. I was diagnosed with PCOS all through my 20s, but I no longer show any signs of it. I also had gestational diabetes. My fasting blood glucose is still decent/borderline, but I suspect that I might fail a glucose tolerance test. As such I try to avoid any large amounts of sugar (don't drink soda, rarely eat candy, etc.)
My B12 and thyroid levels were tested and both are normal. I've had my thyroid tested seemingly endless times because I've had such similar symptoms for so long. I do think vasculitis is a very likely cause, as my mom had a very early heart attack and had a temporary bout where she had similar symptoms to what I have. I had vitamin D tested and I am chronically low on it, so I supplement with it. I don't know if I was tested for any of the other things you listed.
I'd definitely like to see if I could try something like ritalin. At this point my brain is so foggy that it is significantly impacting my writing career, but I think I could get it back. Exercise definitely helps me too. I've had this frustrating thing lately where I'll be great with exercising for a week or two and then get injured because I'm so accident prone. Right now I'm recovering from the last such event!
I did get a referral to the doctor in my area who is supposedly the best for MS, but I can't get in to see her until January. I don't know how willing she will be to investigate further.
This gives me a lot of hope! I would definitely like all the information I can get about nutrition, but I'm also willing to look into it on my own, too! Thanks for the warm welcome and information that's actually useful.
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