Resolved question:
Hello
I am hoping you can help. I am a 37 year old female. I grew up in Chicago and now live in SOuthern California. I am a generally a very healthy and active, busy person.
In my 20s I began experiencing tingling and numbness in my hands, fingers, toes and feet. I also had this strange sensation that my toes were piling on top of one another or like they were being squeezed together, but they were not. These things were annoying for a while, then would go away completely for months then come back for a few days or a week every once in a while. My doctor at the time suggested I take b12 vitamins and even come in for a b12 shot every once in a while (even though my b12 levels were not unusually low). I noticed more energy but the tingling would still come and go. I moved to California and I didn't notice those symptoms being very severe in my late 20s or early 30s. The tingling/numbness started happening again around 35, would last for a week then go away and come back again in a few months. Then, in August of this year, I got excruciating tightening pain that felt like it was inside my right rib cage. I went to the urgent care doctor who ordered an ultrasound. He saw two small stones in my right kidney and treated me for what he assumed was a stone in the ureter (even though it did not show up on ultrasound) and prescribed ibuprofen and flomax. In about three weeks, with the pain intensifying and lessening back and forth the whole time, it all just stopped. I never saw a 'passed stone'. Then, beginning in November, I started waking up every night with pins and needles in my arms and hands. The tingling that I experienced in my 20s came back and would come and go all day long. I also started noticing weakness in my knees that would buckle several times a day. Then, the strangest sensation began. Every day, sometimes right when I wake up, sometimes a couple hours after I way up, an intense vibrating or buzzing sensation begins in my upper right back (near my spine towards my shoulder blade). This (still) comes and goes all day long every day, with varying degrees of intensity. Sometimes the buzzing spreads to my legs, my arms, hands and scalp. I am also very, very, very tired, regardless of what I do all day. The newest symptom that began about a weak ago are intense charley horses in my legs and arms, out of nowhere and I also occasionally 'twitch' or shudder like I am cold (although I am not).
I currently have a really awful HMO health insurance plan and seeing a specialist is proving nearly impossible. The primary care doctor to whom I've been assigned does not seem to be taking me very seriously. He ordered some blood work to check vitamin levels, thyroid, and to rule out rheumatoid arthritis. All is clear except my 'bad' cholesterol is a little high (131). He said he has referred me to a neurologist, although I had to practically beg for that assistance. It's been over a week and no referral has come in yet.
I suppose I am just wondering if you have any thoughts on what this might all be. I am getting frustrated with feeling so badly and just 'off' and would be greatly appreciative if someone could give me their professional advice as to what might be going on here.
Thank you.
Submitted:
4 Days
Category:
Neurologist, Medical
Hi,
Thank you for posting your query.
I can understand your frustration because of suffering for close to 15 years and without the lack of proper diagnosis and treatment plan.
The symptoms are suggestive of peripheral neuropathy (a disease of nerves of hands and feet). Mostly the sensory nerves are affected leading to pain, tingling, burning, numbness, etc. However, the recent symptoms suggest involvement of motor nerves leading to weakness and buckling at knees.
This can be confirmed by doing nerve conduction studies (NCV).
A few recent symptoms also suggest involvement of spine and we need to do MRI spine to exclude an associated spine disease.
The second step would be to determine the cause of neuropathy. This would require extensive work up including- collagen vascular profile (ANA, Anti ds DNA), porphyria work up, serum protein electrophoresis, etc. These are all blood tests. If we do not get an answer from blood tests, then, a nerve biopsy would be required to exclude vasculitis.
For symptom relief, you could take pregabalin or gabapentin capsules. Specific medical treatment can be started after a confirmed diagnosis is made.
I hope it helps. Please get back if you have any follow-up queries.
Best wishes,
Dr. Sudhir Kumar MD (Medicine), DM (Neurology)
Senior Consultant Neurologist
Thank you for your reply. It is much appreciated.
I just found out yesterday that my half-brother ( I am not in contact with him) was diagnosed with multiple sclerosis about 10 years ago (when he was my age). Also, my sister had aplastic anemia 15 years ( I was her bone marrow donor. She is fine now), my nephew (my other sister's son) has morphea, my mother's aunts both had lupus, and I have two uncles on my mother's side with gout. I don't know if any of these things are relevant but I would appreciate your input into the connection (if any) between any of these family diseases and my symptoms.
I really do appreciate your input. I am a generally happy, energetic and optimistic person but this constant 'vibrating' all over my body, fatigue and general weakness is beginning to affect my everyday life!
Thank you again.
Sincerely,
Stephanie
Thank you for getting back.
A family history of autoimmune diseases may mean that you have a higher chance of getting one. So, the autoimmune (collagen vascular work up) that I suggested in the previous mail would be very important.
Best wishes,
Dr. Sudhir Kumar MD (Medicine), DM (Neurology)
Senior Consultant Neurologist,