Hi there, I have been in limbo land for just over 1 year now. Last October I had a laundry list of health problems arise starting with fatigue that brought me to my knees. I had muscle weakness, left arm tremor/numbness, heat intolerance/cold intolerance, cognitive issues, speaking issues, vision changes, headaches, jaw pain, cold feeling cheeks, dizzy, nauseas and I can list more but these were the major complaints with fatigue at the top and most major problem. I went to many doctors and was tested for everything possible, MRIs, CT scans and every known blood test - all came back normal. I had an appointment in December with a MS doctor but by the time my appointment came I was actually "doing better" I say that with " " because I was still pretty tired, but was functioning, numbness was gone, I could hold my baby again, I could walk up the stairs without needing a break - so there was a small improvement. Needless to say this MS doctor basically laughed me out of the building. "you have no lesions - you don't have MS"
I went to the Mayo clinic in Scottsdale in February as my quality of life was not what I wanted. They did a ton of testing, said I have orthostatic hypotension and carpel tunnel (from sleeping too much) and said to get back on that treadmill and to return in 2 months if I wasn't better. I saw a resident in the neuro dept and the physician that supervised him said he would strongly consider MS or a problem with my HPA axis, but his notes came in the mail 3 months later.
Finally in May of this year I went to an endocrinologist who felt my cortisol and ACTH levels were low enough to warrant a diagnosis of secondary adrenal insuffiency. She put me on hydrocortisone and I saw some improvement. I felt about 90% of who I was. Then in June I "crashed" again. My fatigue came roaring back and many of the symptoms were back. They did more tests, couldn't figure it out and sent me on my way. I started to feel better after about 3-4 weeks. Back to 90% me.
Now that brings me to today. I was in a good place until 9 days ago. I woke up exhausted again and my symptoms are back, worse than over the summer. My cognition is horrible - I went to the dollar store for 1 item, got there and couldn't remember why the heck I was there, had to walk the store for 10 minutes until it finally came to me, my left arm has electrical sensations all the way down and fingers feel like they are asleep. My cheeks and lips keep going numb and my jaw is sore and tired. Now my left foot keeps getting a prickly sensation, randomly and quite shockingly at times.
I went back to my neurologist because this seems to be cyclical in nature (like a relapse/remit cycle). She said this is suspect, but my last MRI in April is clear. She wants me to get another scan in April next year to see if anything has shown up.
After all of that I have some questions....
Should I wait until April?
With my endocrine involvement it seems like my hypothalamus is involved, not to mention all my symptoms (other than the left arm,hand and foot issues) are connected to the hypothalamus (thermoregulation, fatigue, low cortisol, nausea). Does anyone here have lesions on your hypothalamus?
I don't want to be laughed out of another MS clinic, but should I find a doctor who is more aggressive?
I know MS is different for everyone and the symptoms are vast, but does this sound like MS?
Prior to this I was a super healthy mother of 4. I have lived in Colorado my entire life and had a severe case of Epstein Barr in high school (heard there is a link). Literally everything has been ruled out!! (test dummy at Mayo).
I am so sorry to hear all you have been through. I am also stuck in limbo land. I have been here now for four yrs, and while my sxs don't seem as severe as yours I understand completely where your coming from. I was laughed out of a rhuematologist office about 3 yrs ago.
My primary thought I may have fibro. It took me a yr to get to a rhuematologist, and then with in less then 5 mins. He told me it wasn't fibro, and walked out of the office. I just remember crying. It wasn't that I wanted fibro, but I wanted answers. Limbo land is so hard to handle at times.
I don't want to act as if I have any answers for you or an idea of what it could be. What I do want to do is encourage you not to give up. There is some wonderful doctors out there that will help you get answers. Don't let the worry or fear get the best of you. Trust that one day your life will be back to normal. I will be praying for you, and praying someone on here can be more helpful. May God bless you.
What about your neurological exam? If your reflexes, eye tracking, balance, etc. are normal you will have a hard time with a Neurological diagnosis. Neurologists can tell a lot from the simple tests they do in their exam room. They were diagnosing people with neurological problems long before MRIs came out. My GP did a Neurological exam in her office and sent me to a MS Specialist because my eyes, balance, and reflexes were all off. She could see I was only getting signals to the right side of my body. Drs. have known I have brain stem damage since I was two years old from these tests.
@unsureMS...she wants to wait until April because that will be a year since my last MRI.
@HVAC...my neuro exam has shown "blunted pupil response" and I failed the memory test (done by the MA prior to doc coming in) and lastly I lose my balance and have nystagmus when I close my eyes but nobody has commented on that one. My reflexes seem normal to me but I don't get much feedback.
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