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Dr Stan
Dr Stan, Doctor
Category: Medical
Satisfied Customers: 2128
Experience:  Physician at Stanley L Simpson, DO
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I have a question about a treatment I am receiving for an

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I have a question about a treatment I am receiving for an illness I have been diagnosed with called Stiff Person Syndrome. My own Neurologist is so busy I can only really ask him things every few months...
JA: Have you seen a doctor about this yet? What medications are you taking?
Customer: Diazepam, Topiramate and Gabapentin
JA: Anything else in your medical history you think the doctor should know?
Customer: Genetic Generalized Dystonia

Hello this is Dr. Stan and I will assist you with your question today. I am U.S. trained,

Board Certified and I have 32 years of patient experience. I am happy to help you. I'm sorry that you have been diagnosed with Stiff Person or Stiff Man Syndrome. The medication you are taking is the appropriate treatment for this progressive neurologic disease. There is one other medication that can be used called Baclofen which can be used to treat the spasticity. The Diazepam dose may have to be increased over time.

What is your question?

Customer: replied 2 months ago.
My question is I have never experienced any pain with these spasms, nor really noticed them until I took the diazepam. It was only then I noticed how stiff I was constantly because that went away. Normally I just had muscle soreness and that sort of burning sensation I knew from experience was nerve pain. But it was bearable and I could still function and carry things. In fact I would lift weights to help keep my strength up.I am a full time nursing student about to embark on my next semester and since I started on the therapy with benzodiazepines a month ago (lorazepam was first but being on that 3 times a day produced some nasty psychotic side effects at a 1 mg dose and I myself pleaded to be switched to something else), I have lost almost all of my muscle strength. I have trouble lifting even my own arms somedays. I feel achey, weak, and have been having some severe reflex tachycardia. At rest my bpm is 80, when I stand it can go to 150. This isn't very strange to me as I have chronic hypotension and it's part of the territory and I drink extra fluids to compensate but it normally isn't that drastic.I'm thinking I won't be able to function on my 12 hour clinical rotations like this... And I want to know if I taper off the diazepam (I won't without permission) if I am damaging myself somehow? I'm not really sure where to find information on what makes this condition worse. I just know I can't lift a patient if I can't even lift a baking pan.I hope this isn't permanent. I know you can't fix everything from this conversation but I'm very relieved you can listen and perhaps advise me with your experience on what you know. I can handle being in a bit of pain if I know I'm not hurting my body. I know that won't kill me. I'm just not sure what's best for me with Stiff Person Syndrome.If it helps I do not have GAD antibodies, the diagnosis was based on continuous contraction of agonist and antagonist muscles caused by involuntary motor-unit firing at rest and rapid conduction tests. My neurologist tends to let me use my own judgement but It's impossible to get a hold of him and no one knows about this disease.Again, thank you for your time and sorry for the info dump.

You are in the 20% of people with this diagnosis that do not have GAD antibodies and I will assume that other possible diagnoses have been ruled out such as serotonin syndrome, MS, Parkinson's and a host of other neurologic syndromes/diseases. As long as you are getting less spasticity from the diazepam continue to use it and adjust the dose so you can function. Also discuss Baclofen with your doctor as another antispastic medication. You have a very rare disorder that affects one in a million and so far we have no cure. I wish I could provide a more definitive answer, but unfortunately, at this time, there is none.

Thank you for allowing me to provide assistance.

I am available to answer any additional questions you may have.

I hope your medical problem(s) are resolved soon and you feel better. If you find the information I provided helpful, so I am compensated for my service, please rate me with 5-Stars. Thank you

Dr Stan and 5 other Medical Specialists are ready to help you
Customer: replied 2 months ago.
Thank you for your time. I think I can probably titrate the dose a bit lower.... It doesn't relieve spasms... I didn't notice them at all until I started honestly. I think I was too stiff to until my body was less tense. But I will rate well. I'm just worried I'll never get my muscle strength back like I had before I started on the benzodiazepines.

You are welcome. You need the benzodiazepines, at least until another better treatment is available.