More pain and stiffness

[Guest]

Hi,

I've posted on here a few times before, but generally have tried to go about my life. I've been battling pain/stiffness/weakness for years and now it seems to have got worse. I had one doc allude to pls. Said I had cranial nerve damage. My neck always hurts when I turn it (95% of the time). I have deep pain in legs when walking or after sitting down. I have urinary probs (leaking, having to go right away). When I bend over and hold that position for more than a few seconds my back locks up and it hurts like crazy to straighten up-same with legs. I can't sit down on the ground and get up easily-muscles get too stiff. When I hold onto something for too long, arms cramp. I get muscle cramps when performing any motion over more than a few times.
I used to get muscle twitches all over but those stopped for the most part.

I don't think it's MS. MRI's looked great I was told.
I did have very low b12 and have that taken care of now (tests normal). But I think it caused nerve damage. The docs said I had nerve damage. I had very hyperactive knee reflexes/gag reflexes. I have pernicious anemia and it is the fatal kind-unable to absorb. I self-inject and have energy now. Before, I was too weak to even get out of bed.

The stiffness in legs/back is getting worse.
However, I am still able to do really strenuous stuff-not like I used to but I can still walk far..all that. I can still swim. When I get out my body feels like lead though.
But there are days when I'm too fatigued to do much of anything. If I get sick, these symptoms I mentioned get much much worse. I've been unable to walk or balance for even a short distance.
I have spots on my arms that are painful to touch.
Reading, I have to close one eye all the time as it causes double vision all the time.
I never feel pain free of full of energy.
Out in cold in winter for too long, and I can't speak-slur words. Lose control. Like my face stiffens up or something.

I've learned that being in hot water makes much of these symptoms go away for a little bit.

The urinary probs are the most consistent and stiffness in back/neck, then pain in legs.

I'm not that old, but feel as if my life is slipping away. I guard myself from people and in general don't have the energy that others do.

I've tripped over my feet a few times and landed on concrete. I've swallowed a few times wrong and inhaled food.

I've heard of the spinal column narrowing and causing nerve damage. Cervical spondylosis I think.

In general, I never mention any of this at all. I think even if I got a diagnosis, no one would believe it is any big deal. Eat better, exercise and you'll be fine is what I hear. I look way too healthy for anyone to believe I am sick. If they only could feel the pain I feel...I can still pass for normal but it takes everything I have and sometimes can only "appear normal" for a short time.
Should I tell people? What should I say?
Could something like early-stage pls possibly allow me to function normally 80% of time with pushing myself? These last 3-4 years things have worsened-esp. bladder probs and stiffness but not a huge amount.
I haven't pursued a diagnosis that hard because I'm not sure I'm ready for it (I don't have much support) and still want to believe I am not sick.

 

[Guest]

Be careful not to attribute all of your symptoms to one cause. I say thins, thinking about your bladder issues. Hopefully you have been thoroughly examined by a urologist, as many treatable conditions can cause your type of symptoms. It would be sad if you missed out on treatment, because it had not been investigated.
I can't really answer your questions about PLS. It seems to be so different for everyone. Sometimes because the person never had pls to start with. It's a rare and difficult condition to diagnose.
I feel fine 80% of the time, except when going up slopes........I have had the symptoms for 4 years and to my surprise, even though my clinical examination had progressed slightly, since my last visit to the dr, I am slowly improving. It's great but rather confusing. Looks like I DO not have PLS.
I really hope that you do not have PLS.
I always told my friends that I had wonky legs or some sort of neurological condition? I avoided and still avoid talking about it.
Best wishes

 

[Guest]

hi ,you need to see a neuromuscular neuro preferably one who has hsp patients as very very few have ever had a pls patient.
have you been seen by a rehumatologist to rule out fibromyalgia,it has many symptoms of pls and can be just as dibilitating.

progression is different for everyone but my progression is slow but typical.
the first2-3yrs was hell and progression was alot quicker,starting in the legs and balance issues.
then things leveled out with long plateaus and exasberation periods,symptoms spreading upwards to include bulbar.
past few years things are slowly going down hill,i now need mobility scooter or wheelchair for outside plus speech, swallowing and using my hands are getting worse..........but i am in my 13th year with pls.
bladder problems have always been noted with hsp but a few years ago they realised it was also an issue with pls and the spastic society changed there information to include bladder problems as a symptom.

while pls or fibro are not life threatning it is beneficial to get an early diagnosis...........only then will you be able to get the full benefit of any treatment and support available.
pluck up the courage and see your gp about a referal,either with a neuro or rehumotologist ..........if ones ruled out there area as a problem then try the other.
take care.

 

[Guest]

I would agree with Olly and Alyoop - whatever you do, be sure to see a neuro who has seen HSP patients - and don't attribute all of your sx. to one condition. The body is far too complex....

I have PLS, but I also have RLS (restless legs syndrome) with tendency to very restless arms...while there's been an established correlation between the two conditions, no one knows why (i.e., there are likely other issues that relate to both that science has not yet found).

I, too, become terribly frustrated with PLS - it's all a big mess....but then, so is ALS. No one can say for sure why people who get ALS or PLS get it, it can be prevented, how pain should be managed, etc. I'm writing here today with my Spinal Cord Stimulator (SCS) turned on a very high setting - and I tend not to use it.

Be sure that you see a neuro - and don't believe everything they tell you either...because they don't know. You have to be your own best advocate (of course, that is true of ALL health care). Let us know how you do! :?: OK?

Well wishes!

Mike