Diagnosed... then undiagnosed... now confused
 

Hi there

I don't know if anyone out there has had anything similar. Anyone who has any ideas would be gratefully received.

I've been diagnosed three times now (first for circulatory problems, prolapsed spin and then peripheral neuropathy).

I've now got to undergo a lumbar puncture (I'm quite frightened about it) as well as electricl nerve conduction tests, blood tests and a stay in hospital to sort out a pain management system.

Symptom history:

June: frequent tripping, walking into things, slurring words, brain fog, clumsiness.

July: Symptoms as above plus swollen ankles... painful feet. Muscle cramps in calves.

August: Symptoms as above plus both calves started having the following symptoms: cold burning sensation, tenderness, sensitivity to cold, draughts and touching.

September: Symptoms as above plus trouble walking. Had to start using a walking stick.

October: Symptoms as above plus mobility worsened and pain intensified (up to a 10 at times). Asked to leave work as a 'Health & Safety hazard' due to instability.

November/December: Early Nov I had to start using 2 walking sticks. 2 weeks ago I had to go into hospital as I was unable to put my right foot down and walk due to the amount of pain. Hospital stay of 4 days. MRI Scan clear (lump on spine due to previous slipped disc, but the lump was not pressing on anything). Prescribed Oral morphine, dihydracodeine, 1000mg paracetamol and dicolofex. Takes pain down although not completely gone.

Last night (8th December) I saw a neurologist, who is going to carry out more tests.

Has anyone had anything similar? And has anyone had a lumbar puncture, and if so is there anything I can do to prepare myself and make it easier?

Many thanks - any advice gratefully received.

Sue

Hi, Sue,

I don't know that I know what a lumbar puncture is; it's possible I may have heard it by a different name.:o

Though I understand that it's all pretty scary, the best thing happening right now is that the neurologist (by what you've relayed) doesn't appear to be messing around.

I've had EMGs/NCVs - also by a neurologist.

I don't know when your testing is scheduled, yet if time permits, I would suggest calling the neurologist's office and ask whether there are certain things you should/should not do prior to your appointment time. For instance, I know that my neurologist tells all patients to use no lotion.

As baby-ish, too, as it may strike some: I've always taken a small stuffed animal; not only does it help distract attention from what the neurologist is doing, it also something to squeeze if/when there is discomfort.

For me, the worst part of the testing was on one of my palms and my lumbar spine. But... that crummy sensation did not last an eternity.

Any/all of the tests you're having, chances are: Your neurologist or the doc's staff can give you information (often it's called something such as "Patient Education" or "Patient Information) about the testing.

Just don't be afraid to ask questions :).

The lumbar puncture--
 

--is also known as a spinal tap, during which a needle is inserted into the lower spinal column and a small amount of cerebrospinal fluid is extracted. It is then examined for blood, autoimmune markers, and infection.

It's not a pleasant procedure, but it doesn't have to be really bad, either. It often depends on the skill of the performer, and how easy it is to find your spinal canal, given your individual anatomy.

You will be told to lie flat and unmoving for a several hour period of time afterwards, in order to avoid headache that often results from the reduced spinal fluid pressure after extraction.

Thank you so much for this. I think I will take along a stuffed animal for comfort, that's a great idea.

I've also got to have electrical nerve condition tests and Pain Management as well as some other tests... not so nervous about them, its just the idea of a great big needle being inserted into my spine and then fluid drained off.

Thank you very, very much for your help.

Sue :)

Yes, I'm somewhat obese so am more nervous as I guess my flab is going to hinder finding the spinal canal. I don't think I can realistically loose any weight between then and now (hopefully it will be next week), but at least I now know (thanks to you) that it doesn't have to be too bad.

Thanks very much for this.

Sue :)

When I've had my testing, Sue, the neurologist has been pretty darn'd good. At the time, I thought she was just conversational/chatty or friendly. Later, I realized she was talking about things to also help distract from effects of what she was doing. It did help immensely.

Some of my doctors, and their nurses, have also told me that while in med. school, there are procedures that they do practice on one another and on themselves.

After your testing, let us know how it went for you.

For the lumbar puncture I would practice relaxing. And, if you have a chance maybe you could ask them to test for B12. I think that the fluid shows more clearly what the actual B12 level in a body is.

Your problems remind me so much of when I was living in hydrogen sulfide. I used to walk so irregularly, and bump into things, big things like walls and buildings. I still do, to some extent, but it's a lot better. And, I had a prolapse that went away when I wasn't in the hydrogen sulfide anymore.

The hydrogen sulfide in my case came from a broken sewer pipe that broke because it was laid over an old outdoor toilet pit, so there was old and new ... excrement and every time I cleaned or took a bath the water went into the mess and made the hydrogen sulfide worse.

I have a website that deals primarily with B12, but I also have some pages devoted to the outdoor toilet pit and a woman wrote to me that she was having a lot of the problems I had ... hers problems were from hydrogen sulfide, too, but from living near oil wells. Apparently they give off hydrogen sulfide.

If you have an ill fitting toilet, that can let the sewer gas into your home, and so can a sink or shower or tub in a bathroom you don't use where the water in the traps dries up.

You may have something totally different, but whatever it is, it sure sounds a lot like what I experienced.

Because nerves were involved I got a lot better after I got tetanus and used huge amounts of vitamin B12. My peripheral neuropathy went away. I still bump into things when there's a lot of stress, though.

I hope you find some relief. It's so, I don't know how to explain it, but it's so upsetting to bump into walls. I slammed into one the other day when there was a lot of stress, and while it hurts, it also is so unnerving to not be able to miss something big like a wall.

(((((((((susan))))))))))

You reminded me that I gained a lot of weight when I couldn't walk very well. Plus, the "flab" thing reminds me that when I started eating brown rice I lost a lot of weight... a woman wrote me about it after she read on my site about the pit.

I'm a bit tired, so I'm not sure this is tracking very well.

Feeling real low now
 

Thank you so much for your replies.

I will practice relaxing.

Until a few years ago I had good health, and then in Sep 2006 I had a Thyroid Storm, and then was diagnosed with Graves Disease.

This year it seemed to be under control and I had enjoyed about 4-5 months of 'good' health... and then wham, this thing with walking into things, slurring words, missing my mouth and my legs started.

Last month I saw my endocrine specialist for the 'all-clear' on that side, hopefully. He took me off a block & replace programme (high carbimazole to stop the thyroid working, high thyroxine to replace the lost hormones). I thought at least that's one thing off the list... now just get this latest thing done and great.

Today I had a routine blood test, and the hospital just rang up to say the results are abnormal - I'm highly overactive again.

I am waiting for a call from the hospital to give me the date to go back in to have my tests... they rang yesterday and said they are still hoping to get me in later this week. I can't wait for them to be out of the way.

I just feel so blue at the moment... know I will come out of it, but feels so hopeless at the moment.

I will read through other stories on this forum as that helps a lot... it makes me realise how strong and wonderful so many people out there are... and I know it will give me the strength to carry on.

Thank you to everyone who's helped me by responding, and thank you also to all those wonderful people who have posted their stories... you have no idea how important they are to me.

Im sorry your going through such a tough time
xxx
I too have been diagnosed then undiagnosed from one specialist to another specialist and it's the toughest thing to go through.
Sorry I don't have any advice, just wanted you to know I'm thinking about you and praying something positive happens and you get the answers you need :hug:
xxx
Sammy