Neurology

[livingwith]

I noticed my first symptom a couple years ago - I had double vision in my peripheral vision. Over the course of the last couple of years, I now have severe bouts of itching (very isolated to usually one area), loss of coordination, headaches, rapid eye movements, chronic back pain (have had a spinal fusion), night sweats and insomnia, leaky bladder, depression difficulty concentrating. I have had back problems for many years and have had surgery, chiropractic care, physical therapy injection...Read the full article

[odie]

I was very interested to read of your suffering re: spinocerebellar ataxia. I have been diagnosed with severe cerebella ataxia and like you wondered if I had in fact got MS. I have been seeing my specialist for four years and am considering asking for a lumbar punture. This will finally put my mind at ease around my concern of having MS. I suffer with severe headaches every day and lethargy. I have peripheral nerve damage in both my feet and legs which is extremely painful on a daily basis. I am now beginning to suffer sharp stabbing pains in my right eye with blurred vision. There are other symptoms that seem to come on and then disappear for a while. It was extremely comforting to read that there are others out there who understand the frustration and pain experienced by the symptoms brought on by the shrinkage of the cerebullum. I too have been through the idea that it may have been caused by a chemical. Without going into detail, I had cause to be on medication for a long time and wondered if it was the isoniazid in the medicine that caused it, as my symptoms came on soon after. But with further investigation it has been decided that the damage probably occurred long ago. I feel so frustrated not knowing for certain, which is why I would feel happier if I were to have a lumbar puncture to rule out other diseases. I use crutches to help with balance and foot pain and am grateful that I am not in worse shape. The ataxia has ensured that I slow down and as a result I am able to notice the world around me, which actually, is very beautiful. The positive side to my illness has shown me how kind and caring people are toward me, who in the past scarcely spoke to me. I know that this is not so much that they have changed but in fact, I have changed. I had to. My specialist told me that he did not expect me to get worse but I have. At first depression set in but then I realised that I needed to wear my positive head and be practicle, so I have altered my surroundings and life to accomodate my changed needs.

[onebusyb]

Hello Odie, thanks so much for your comments. I'm sorry you are having so much difficulty. Spinocerebellar ataxia is a "broad" diagnosis, especially since there are 25 or so types of SCA. Have you had any DNA testing to try and narrow-down your diagnosis? I's assuming you are seeing a neurologist?? I'm a little surprised that they haven't already done a lumbar puncture over the course of 4 years. Have they said what has caused the nerve damage to your feet/legs. Keep digging for answers.

I too am going to request a lumbar puncture on my next visit to UVA (imagine actually requesting something like this!) I'm also going to insist that the neurologists/oncologists, etc. gang up on Anthem to approve a PET scan. I can't get the idea out of my head that I may have a tumor causing these symptoms. Anthem will not pay for the scan without a cancer diagnosis, but what they don't understand is that with a paraneoplastic syndrome, the tumor will cause the symptoms that I'm having years in advance of it actually manifesting itself. It is extremely stressful enough to deal with the illness, let alone having to fight the insurance company at every turn. I have never been very good at sitting around waiting for answers, so I'm sure the docs hate to see me coming. My sister recommended that I go to another big University for another opinion. I took her up on her advice and I have an appt. schedule at the Mayo Clinic in Jacksonville, FL in December. I look at it like this: If they are going to diagnose me with something that could potentially put me in a wheelchair, I'm going to do everything I can to make sure they know what they are talking about!

Hang in there and keep me posted.

Belinda

[odie]

Hello Belinda.
I can empathise with your frustration around not being heard. I believe my symptoms are exasperated by not knowing for certain what is happening to my body. I'm sure the specialist's job would be made easier if they had the people skills of putting our minds at ease. My next appointment with my specialist is not until January of next year. He sent me to a physiotherapist whom I have been seeing for several months. However, my therapist is unsure of which symptoms to treat and asked me to contact my specialist to discuss my symptoms before January. I phoned his secretary and she told me she would get back to me, which she did not. So I phoned her again and she told me that she would get my specialist to ring me. He did not! I returned to my physiotherapist and told her the results and asked if she could contact him herself to find out what he wants her to do. My question is, why did she not contact him herself in the first place, after all they both work in the same hospital! When things like this happen, I feel as though I don't matter or worse, they are not taking my symptoms seriously. This is when I have to access the positivity in me to prevent myself from sinking into depression. I do hope you have success with the university if you choose to go there. It felt so good to receive your reply. My friends and family are wonderful and help me a great deal, but to have the opportunity to communicate with a fellow sufferer is a medicine in itself. I guess we just have to keep going and eventually we may get answers. please keep me posted.