ALS, BACK PROBLEMS? HELP

36 yo female. Renal failure 2/09 unknown cause. GB removed in 5/09. In June, thought I had bilateral shin splints from trying to get back into exercising as every time I did, both calves hurt and hips and buttocks. At the end of June had bilateral calf pain, which I went to the ER for. Told I had hyperreflexia, Hoffman and clonus, which has the hyperreflexia of 3+ with intermittent 1 beat clonus on L has persistent. Hoffman intermittent by examiner’s opinion.  MRI of brain (normal) MRIs of my back showed C4-5 and C5-6 bulging, herniations indenting cord at T5-6 and T2-3 with L5-S1 bulge with annular tear. I had 4 EMG/NCVs with the first on July 2/09 showing mild right carpal tunnel, the 2nd on July 16 showing polyphasic with normal motor recruitment in hallucis longus consistent with mild L5 radiculopathy. 3rd done 07/28/09 of 3 extremities was normal. 4th done 9/1 of 3 extremities was normal. Skin biopsy for neuropathy & spinal tap were normal. Blood work normal. The pain I had in my calves had moved up my body with severe bilateral leg burning and tingling. I have burning groin and rectal pain with pain on bilateral buttocks and underneath & diminished sensation when having to use bathroom.  Toes numb and tingling when I sit at all. For 2 months I have widespread muscles twitches in legs, feet, hands, face, back, chin arms, abdomen, shoulders. Hands very stiff, clumsy and neck is very sore. I think I see atrophy in my feet and hand, but am not sure.  Three neurologists not ALS. Symptoms getting worse I am terrified. 4 surgeons who said the leg symptoms could be from the T5-6 herniation but not arms. Have facial tingling and it will feel tight. I know ALS is not sensory and I try to keep that in mind as this started with the bilateral pain.   Flexing feet I feel pins and needles in big toes. Have pins and needles in feet on bottom when I walk. Have tremor and in hands. I think I see muscle wasting in hands I had aches and pains before.

[Neuro Forum]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

Without the ability to examine you and obtain a history, I can not tell you what the exact cause of your symptoms is. However I will try to provide you with some useful information.

It sounds like you have had an extensive work-up including multiple EMGs and a skin biopsy. Given that these have not shown evidence of ALS, combined with your symptom description, in which pain sounds like the predominant problem, it is likely that ALS has definitively been excluded. Pain is not a prominent feature of ALS, and over time, abnormalities on EMG would show up with ALS.

Whether or not disc buldges are causing symptoms depends on what level they are and how much pressure they are placing on the spinal cord and/or nerves. Buldging of a disc alone would not cause symptoms, unless it is pressing on the spinal cord or nerves. As you mention, it is correct that a problem at the thoracic level would not affect the arms.

Pins and needles and burning pain occur with neuropathy. There are 2 types of nerves in our body, large and small. The small nerve endings supply the skin and sweat glands. There are two types of sensory neuropathy: small fiber and large fiber (depending on the size of the nerves affected). With small fiber neuropathies, symptoms including burning or buzzing or other vague symptoms starting in the feet and hands then in some cases spreading to other parts of the body.  The EMG/nerve conduction studies (NCS) (tests done to check for neuropathy) will not show an abnormality, a biopsy would be expected to show an abnormality, but can sometimes not be definitive. There are other tests of the function of small nerves that can be ordered, such as QSART testing which looks at how much sweat the skin makes, since sweating is in a sense of function of these small nerves. There are several causes of small fiber neuropathy, including diabetes, vitamin deficiencies, autoimmune problems.

Given the extensive work-up that has not so far shown an abnormality in the nervous system, one other possibility that comes to mind in the setting of significant pains in the limbs is fibromyalgia. Fibromyalagia is a medical condition that leads to whole body pains, and is best treated with specific medications, exercise, and physical therapy.

Continued follow-up with your physicians is recommended.

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.