mookyred
Active member
- Joined
- Jul 23, 2006
- Messages
- 76
- Reason
- DX UMND/PLS
- Diagnosis
- 01/2007
- Country
- US
- State
- Florida and Pennsylvania
- City
- Davenport and Harrisburg
I have been to 4 states to get a diagnose. Symptoms started in 2003 and just ignored them until 2004. My first nerurologist was an MS specialist. He went through the ruling out process. I couldn't wait so went John Hopkins they diagnosed me with MS. Then went to Mt. Sinani hot thesptial in NY.
They treated me for MS. At the time I was clumsy, I had a startle response where my legs would completely stiffen and I would look like a tin man. I realized I didn't have MS and called Shared Solutions and asked if I could ween myself off of Copaxene. I stopped immediately as I put that poison into my body for 6 months. Went back to my original neurologist. He sent me to the National Institute of Health to see if I qualified for a clinical trial on PLS. They confirmed I did not have MS. They wouldn't take me in the trial as I had lesions on frontal lobes. They wanted candidates with no other diseases. They said the lesions, that were used to diagnose MS were Ischemic Small Vessel disease.
They also said there was something else wrong with me...maybe a sero-negative form of Stiff-Persons syndrome but I did not have the anti-body. So he said I most likely had PLS. Again, because I wanted to know and read everything I could get my hands on, I made one more trip to university of Michigan because I read about Dopa-responsive dystonia. It was a shot in the dark, but this disease was curable with a drug called El dopa. So he gave me the drug to try but didn't work. He said mostly likely I had PLS. So I finally accepted diagnose. I am seen at an ALS clinic in Hershey, PA....wonderfu,...they take PLS patients. I would not go on any muscle relaxers after baclofen I tried in 2004. I finally told the clinic, who wanted me to go on baclofen, I wouldn't do it. However, I comprimised and went on diazapam which I told them. It was the best thing that happened to me. My startle response and spasticity were much better. My point here is each one of us has to find the right cocktail for them. I take an anti-depressent and 4 mg of diazapam every day.....physical therapy is the key for me. You have to keep up on the muscle weakness. I have swallowing problems now and talking problems. If I experience any anxiety, I can't talk. Attitude is the key. I never give up that I can keep this thing somewhat under control. Diet is also key and a good physical thearpist and aqua therapy is the best in most cases. I push myself...but when I slack...I can tell the difference. We all know our own bodies. Research your disease, , I tell the doctors what I will and will not do, but don't do that unless you've been through the ringer like me and totally understand PLS. It differs in everyone. They overdosed me one time and that's all it took. Physical therapy EVERY year that's all we can do. Look for an ALS clinic in your area. You'll have access to speech therapists, occupational and physical therapy, neuropsychologist, social worker, counselling, testing for breathing function and a neurologist. I am lucky, I have no pain. Just wanted to share.
They treated me for MS. At the time I was clumsy, I had a startle response where my legs would completely stiffen and I would look like a tin man. I realized I didn't have MS and called Shared Solutions and asked if I could ween myself off of Copaxene. I stopped immediately as I put that poison into my body for 6 months. Went back to my original neurologist. He sent me to the National Institute of Health to see if I qualified for a clinical trial on PLS. They confirmed I did not have MS. They wouldn't take me in the trial as I had lesions on frontal lobes. They wanted candidates with no other diseases. They said the lesions, that were used to diagnose MS were Ischemic Small Vessel disease.
They also said there was something else wrong with me...maybe a sero-negative form of Stiff-Persons syndrome but I did not have the anti-body. So he said I most likely had PLS. Again, because I wanted to know and read everything I could get my hands on, I made one more trip to university of Michigan because I read about Dopa-responsive dystonia. It was a shot in the dark, but this disease was curable with a drug called El dopa. So he gave me the drug to try but didn't work. He said mostly likely I had PLS. So I finally accepted diagnose. I am seen at an ALS clinic in Hershey, PA....wonderfu,...they take PLS patients. I would not go on any muscle relaxers after baclofen I tried in 2004. I finally told the clinic, who wanted me to go on baclofen, I wouldn't do it. However, I comprimised and went on diazapam which I told them. It was the best thing that happened to me. My startle response and spasticity were much better. My point here is each one of us has to find the right cocktail for them. I take an anti-depressent and 4 mg of diazapam every day.....physical therapy is the key for me. You have to keep up on the muscle weakness. I have swallowing problems now and talking problems. If I experience any anxiety, I can't talk. Attitude is the key. I never give up that I can keep this thing somewhat under control. Diet is also key and a good physical thearpist and aqua therapy is the best in most cases. I push myself...but when I slack...I can tell the difference. We all know our own bodies. Research your disease, , I tell the doctors what I will and will not do, but don't do that unless you've been through the ringer like me and totally understand PLS. It differs in everyone. They overdosed me one time and that's all it took. Physical therapy EVERY year that's all we can do. Look for an ALS clinic in your area. You'll have access to speech therapists, occupational and physical therapy, neuropsychologist, social worker, counselling, testing for breathing function and a neurologist. I am lucky, I have no pain. Just wanted to share.
