numbness an pain in legs and moving up body

Hi Julie,

Have you not been diagnosed at all by a Consultant Neurologist at all? I assume you live in the UK, correct me if I am wrong. I for one, had similar issues, have you not had any CT scans, MRI scans, etc? It took Doctors, Consultant Neurologists and Professors specialized in the field of Neurology to eventually come to conclusion what was wrong with me, which at the time was Focal Segmental Dystonia, you can also get a form of Dystonia if you suffer from Functional Episodes (I would give you a website that explains this, but it would cause this post to get placed in moderation), the Consultant Neurologist that runs the site is well known in Neurology in the UK, his name is Dr Jon Stone.

I was diagnosed nearly 30 years ago, the reason it took so long for me to get diagnosed correctly is because at that time I was one of seven reported cases in the UK. It was rare back then, not so rare now though however some people think it has similar symptoms to MS, it may look that way to some normal General Practitioners because they have never seen actual people that suffer from it. I was diagnosed in the end, which took nearly 2 years by a Professor David Marsden from the US, that I met in London. Sadly, he passed away at a young age, but was known worldwide.

My mobility has gradually decreased over the years, because Dystonia has many variations - and over time can lock and deform your body, with muscular spasms, cramps and muscle issues. To me it is a condition I would not wish upon my worse enemy, there is no cure and it can only be controlled by medications and BOTOX injections every 3 months which are very painful.

It may not even be this, but you need a proper diagnosis, not a consultant which probably sends you home with no diagnosis and some tablets.

Regards,

Les.

Hi les, I've not been diagnosed I've had all the relevant tests Mri, ct scans,lumbar puncture, something they do on your ankles and feet( can't remember wot it's called) but it was uncomfortable because my feet are numb. I have different feelings In my legs 1 feels heavy and slightly numb where as the other leg is totally numb can't feel heat on either led but the right is worse than the leg.also constipation and bladder problems. Swollen stomach (looks like I'm pregnant) lol. Can't feel anything in my private parts either.  

Yes I am in the uk  

and thankyou for replying x

Hi Julie,

I know all the tests you have mentioned, including the one with the point and rubber hammer (Reflex Tester).

When you had the Lumbar Puncture done, was this checked as a possible Lumbar Herniated Disc problem, another it could be is a Lumbar Degenerative Disc Disease, but this will depend on your age. They normally strap you to a large wheel which they can turn around in various directions after administering a dye (You normally have to stay in hospital after this procedure because of possible side effects). The brain in this disease cannot always distinguish exactly where the pain source is, therefore it can become deferred, meaning you would feel pain in different parts of the body. This would also cause problems with constipation and bladder issues and your "private part" as you put it. lol  Very polite I must agree there.

The swollen stomach would also be part of this, due to the constipation - this could be an adverse effect though, I'm not sure how much you know about the body functions, so I'll go along these lines - You can be constipated and suffer from diarrhea at the same time, basically you can have both at the same time and that is more commonly known as "overflow", it means the rectum is constipated, but behind it is diarrhea which will not move until the constipation has moved or dealt with first. You can buy these remedies for this over any pharmacy counter, or if you are like me and cannot stand paying out for more tablets, then there is an alternative way. Make a yourself a nice cup of coffee, but do not use white sugar, put instead 4 spoonfuls of brown sugar in it.

It takes about 2-4 hours to work, to be honest I quite like coffee and brown sugar, but thats me. Now, if none of the above is correct, I can give you a specialist Neurology Consultant in the UK, he runs his own website which I mentioned in my prior message, but I will need to send it to you via Private Message because of guidelines of these forums (I'm going to ask Alan in the new year if he can white list for me, everytime I post it, the post goes into moderation which is a nuisance, when no moderators are around.).

Well, I hope you are having nice weather and not snow like some people, we are too far south to even have a flake, let alone snow!

If I can help a person out, and it is things I have gone though over the years, I will reply - and my hospital records are huge volumes, not a thin one either.

Regards,

Les,

Hi les, I did hear about the dye that they put in but not sure if it had anything to do with strapping me to a wheel. They have said that I have degenerative discs I'm 50 btw. I've always suffered with my back but sometimes it was easier to work through my pain but now that's not the case. They asked me if I'd been ill prior to this I said I hadn't and they replied with u must have had a trauma or something when I told them that none of these happened they were baffled. What actually happened was that I woke up in the morning and it felt like my left leg had gone to sleep it ached and was a little numb but later that day I started to feel my legs goin numb, so I went straight to a&e I was admitted and I was there for a week after doin all relevant tests they discharged me as an outpatient. While in hospital I was unable to walk without a frame it was so scary. So I'm still off work can't do a lot without hurting just wish I can get back to how I was or even a bit like I was x 

and yes we have had snow quite a bit actually but the main roads are clear now good job cos I have a driving lesson later today.

i don't like snow and I hate winter. I actually feel worse when it's cold x

Hi Julie,

I did mention this one "Lumbar Degenerative Disc Disease" but I did not know your age, so I assumed that it would not be this. But being around 50, it can effect you. I'm 51 and have so many ailments against me you wouldn't believe I was half a century!

You can find more information on this site, including surgery if you cannot handle the pain, but it is better if you read it yourself, rather than me copying and pasting chunks of the page.

https://patient.info/doctor/spinal-disc-problems-including-red-flag-signs

I can point you to non-surgical ways, but I will need to private message you the website address, it will just become moderated otherwise. I am not sure when the moderators are around, to be honest. I was shocked at some statistics I read on this disease it can affect people as young as 19 years and up. But I also found 6 passive treatments that do not include surgery. There are numerous painkillers that can be used but this depends on the person, and there are ways to release painkillers in your body that can be used.

If you want the specific website I got the details from apart from this one, then let me know.

Regards,

Les.

 

Shall I put my email address down for u or fb x

Yes it is all down to my back they seem to think I have a damaged nerve and its inrepairable.but I can't agree with that.

Interested so checked out a couple of other sites. Steady Health comment saying it is very hard to fix nerve damage because the lower part of the broken nerve usually dies so is practically unrepairable. Someone mentioned stem cell therapy can cure but very expensive. Notice nerve damage can also be down to being autoimmune which I am - great. Also take a look at Web MD they are good.

Thanx for your reply will have a look. My mum has actually said that she would pay for private treatment but what treatment should I be looking at as I havnt had a diagnosis x

Suppose you might have to go private for one, maybe have another shot at your doctor first - all linked to private hospitals many even work in them for extra money.