Quote:
Originally Posted by EmilySH
My neurological symptoms started almost a year ago, and at first I only experienced burning feet at night that was more of an annoyance than anything. I was losing sleep a couple times a month, but my work schedule allows much flexibility so my way of life was not gravely impacted. However, the past two months have been a nightmare. On Jan. 25 I started again experiencing the burning feet but it did not go away, lingering all day and night for three days. On the third day of this "flare up" I laid down in the bed due to the impeding fatigue and a painful spasms or lightening shock ran through my right arm and my arms have not been the same since. They immediately felt odd and numb.*
Since they have become weak and my hands very clumsy. I am dropping things and legs feel like jello at times. Symptoms vary from day to day but for the past eight weeks I have experienced a combo of lightheadedness, heavy limbs, legs have become weak with exertion, strong heartbeat, muscle fatigue,muscle twitches all over (randomly), some neck and facial muscle fatigue (especially after talking a lot). Within the past couple weeks my hands have started to burn as well.*These are just those tgat have stuck, some symptoms have come and gone and new slight thingspop every other day. This week I have experienced more back back in addition to burning and tingling has become more prominent in lower legs. Physical exertion seems to trigger symptoms along with computer work making my arms give out and go numb in hands.
I have been to my primary doctor 6 times. Tested for many things and ruled out a lot.. Had a brain MRI that was clear, so no MS. B12 okay (450), high alpha gobulins, cortisol spike (looking more into this in 24 hour urine analysis- JUST RECEIVED WORD THAT THIS TEST IS NORMAL), high Mch in total blood count. Other than that all is normal, no lyme (so I think, but I know this is controversial), no rhum art, lupus. I was put on Lyrica, low dose and slowly increased. Didn't see much of improvement for a while. Upped the dose, it helped the burning feet but I felt immense brain fog. I couldn't focus and was not myself. Lowered the dose as of now because I do not want to become immune and dependent on the med until I KNOW what is wrong! I am not one to be highly medicated or cover up symptoms without knowing the cause. I am being referred to a neurologist, but who knows when that appointment will come through. Hoping to get a call sometime this week. Any ideas, suggestions, thoughts, words of encouragement would be great appreciated*
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Hi Emily,
Your symptoms sound a lot like mine although I would have to add in a weird crawling icy sensation in my legs all through the days. I've suffered from this nerve related stuff for at least four years. About a year into it all my menopause was well underway and then my joint pain started up acutely. After this I was eventually diagnosed with Rheumatoid Arthritis and the nerve symptoms came and went alongside my rheumatic ones. However I am equivocal for autoantibodies. I did take three DMARDs over three years including injectable Methotrexate - and like yourself I'm terribly averse to drugs and also very intollerant. I came off them all eventually for this reason and the RA symptoms have never returned.
But the neuropathic symptoms, similar to those you describe, have gone from strength to strength over the last year and I have had many investigations - so far none have revealed anything. It is classed as a mild idiopathic small fiber neuropathy to date.
I take it diabetes has been ruled out and that you have no other worrying symptoms such as rashes?
My rheumatologist has agreed that in my case it probably is part of my multi-system autoimmune disease because I have a high ESR and other inflammatory markers and my rheumatoid factor fluctuates but was raised above normal when my symptoms started. I also have Hashimoto's Hypothyroidism of many years now.
One of the many things I've learned from this forum is that the amount of nerve pain does not necessarily equate to nerve damage - in fact numbness tends to represent a more advanced type of neuropathy than pain. I always think it's like when a tooth is dying and the pain is awful - but once it's died then the pain goes and root canal treatment can be done without any local anaesthetic. Push this up to a grand scale and to me this is how it feels. I have just had a skin biopsy taken from each leg and am hoping something shows up but have been warned it probably won't - and even if it does it won't actually show the cause.
I agree about symptomatic treatments such as Gaberpentin - which I tried too but was like a drunk and angry so only made it up to a medium dose before having to stop. I also tried (and loved) Amitiritpyline for 3 years until finally it stopped working and started causing severe heart palpitations so I stopped and had a giant flare up afterwards. Also I've taken Cymbalta for four months and had to come off this too for the same reasons you outline - I don't want to take anything until I know what's causing this problem. I don't mind so much with RA/Lupus drugs because they are addressing my autoimmune process at source but symptom treatments and me just don't work. I find magnesium spray helps somewhat and also take AdCal D3 and B12 sublingually although mine isn't very low. I have recently passed from extreme burning pain in feet and legs to very little pain but lots of cold numbness. A new phaze is born!
Good luck getting to the bottom of it all - I'm afraid I haven't got there yet but I never give up hope that I will.
Warm regards, Mat