Spastic paraplegia and Antibiotics?

[nealb]

Hello all,

I am new to this forum. I was diagnosed with hereditary spastic paraplegia about 5 years ago. It was a diagnosis of exclusion. My grandfather was diagnosed with MS in the early 60's which my neurologist says may of been spastic paraplegia. My symptoms are increased spasticity and weakness in my legs. Other symptoms include poor circulation, distal sensation loss, pain and extreme fatigue (probably the worst symptom). I have been using a wheelchair and forearm crutches to get around for the past year as my condition has deteriorated. Recently I got strep throat and was put on a low dose of antibiotics for 5 days. 2 days after the treatment I was starting to have increased circulation in my feet, more distal sensation, and after about 4 days I was walking unassisted. I was even able to shovel snow off my side walk. This lasted for about a week, and I was beginning to think that I was cured and on my way to healing. Then the symptoms slowly began to come back, especially the fatigue. I have a call into my neurologist but haven't heard back yet. I guess I am looking for feedback or suggestions about where to go with this. Has anyone heard of anything like this?

Thanks for you help
Neal

[Ian B]

Hi Neal,

HSP since 95/96 here and I guess in that time I must have had antibiotics for something or other, and if I had I didn't get any relief in HSP symptoms, tho' mine have never been as bad as yours.

I'm a member of a HSP specific support Yahoo group and don't recall seeing anything like that posted there. It may well be worth your joining and asking there http://health.groups.yahoo.com/group/HSP_friends/

Ian

[nealb]

Thanks Ian for your reply,
I will post on that site as well.


Neal

[Tokahfang]

I am a spastic quadriplegic (hereditary) and I haven't had that result either. I wanted to make sure though - you've been checked for Lyme's, right? It causes a gamut of neurological damage, and antibiotics actually make it better.

Otherwise, you had some good days, and I'm glad indeed for you. =)

[Sue Pendleton]

I agree with Tokahfang. If a lumbar puncture and thorough blood and genetics test weren't done to 'exclude' other causes than I'd be pushing for an answer to why your neuro decided it was herditary and that it is SP. Just my humble opinion.

[nealb]

Thanks for the feedback. Genetic test was done (negative), multiple blood tests, MRI, but no lumbar puncture. Definitely no lymes test. I think maybe I should be pushing for further testing.

Thanks
Neal

[Ian B]

Hi Neal,

Just out of interest, my lumbar puncture was done long before my being diagnosed HSP and the results baffled my neuro at the time because they showed the presence of protiens that in his experience usually indicated MS or cancer, but both could be immediately ruled out.

Ian

[nealb]

Ian,
So that lumbar puncture didn't help with your diagnosis? Did the lumbar test hurt? Did you take a genetic test? How did you get your diagnosis of hsp?

Neal.

[Ian B]

Hi Neal,

I was referred for a lumbar puncture after another doc noticed something badly amiss with my legs, namely the muscle tone, they were nearly rigid even when fully relaxed.

If I'd known I'd been booked in for a lumbar puncture I might well have had second thoughts as I'd heard so many horror stories about them, but in the end it was pretty much painless. The only problem was, besides having rigid leg muscles, those in my lower back were/are equally as bad, so much so I've ended up with a slight lordosis. I just couldn't straighten my back enough to make inserting the needle as easy as it should have been, the doc really struggled and it needed a few attempts before he finally managed it.

I've been offered the genetic test by my neuro at my local hospital, but when first mentioned it would have meant my travelling a considerable distance to another hospital, and as even a positive HSP result wouldn't change my treatment, I declined the offer. Seemingly it can now be done locally so I think I'll ask my neuro when I see him next in July.

I think I'm right in saying, unless there's a family history of HSP (not so in my case) any diagnosis is one of excluding other disorders first till there's only HSP left. At least that's how I came to be diagnosed.

I'm still not 100% convinced they're right as I also have symptoms that simply don't fit HSP, which my current neuro has explained away as my possibly having a secondary, albeit it unknown atm, disorder.

Ian

[Sue Pendleton]

Lumbar punctures are a crap shoot. The procedure itself is normally fairly painless just stay relaxed. Pain afterwards very from none or slight neck pain, severe neck or upper back pain and in some cases (I think normally in young children from what an oncology nurse told me) nasty rectal pain. You can reduce chances of bad neck pain by laying horizontal for as long as possible and as soon as possible afterwards. My second one a nurse kept applying an ice pack under my neck and that did help with my pain. My first was while I was in an induced coma and don't remember any pain. Should you be the rare adult who gets rectal pain the nurse said that can be treated with a morphine suppository as she used them with kids. Maybe start with the genetic component which should just require a blood draw.