[alena]

hi again, I was visiting the "original Braintalk forums" - I did not post much, because my English is very often not good enough to "let me say what I really would like to say" .. so I was mostly just browsing and looking around .. and I am glad to have found this "new" BrainTalk again ..

there is a few new things about me .. but I am still in limbo ..

briefly:
- I have had many MS symptoms for a couple of years, getting worse, but no attacks (fatigue, muscle weakness, tingling, pareshesias, L´hermite, dizziness ..)
- plus I also suffer from some other symptoms that - as my docs say - have nothing to do with MS - e.g. constantly moving/wawing/oscillating vision, swolen lymph nodes, myoclonus/muscle jerks, tinnitus, constant burning feeling in my muscles/skin (??) in hands, around stomach, neck ..etc.
- my docs keept telling me for many years that my problems are just "psychological" - so there "was no need" to do any serious examinations/tests etc.. - so I was treated as a hypochondriac for about 9 years ..

this summer I finally found a new neurologist, who sent me to the hospital to prove/rule out something - susp. MS - so I finally went through MRI, EP, Lumbal Puncture etc .. ... which I was really happy about ..

but - the results did not help me much to get out of the "limboland" - because the MS has not been proved ... because there is no evidence of anything anywhere but the spinal tap:

I have elevated levels of IgG antibodies / 4 oligoclonal bands in CSFluid ..
+ my blood tests showed some autoimune problem,

+ I have no reflexes on the left side of "abdomen area" (I do not know the proper name of the reflex, it should be present when skratching with e.g. pencil on the "around stomach" skin)

the result that my docs told me was: we do not know ... and told me that I would just have to wait - at least a year, may be ten years - until "something happens" ...

so I am much more hopeless now then before - the only difference is, that before going to hospital I only felt - and now I am sure - that there is something wrong - but the neurologists now say "this is not neurological" problem - but all the other doctors keep sending me to the neuro back again .. etc..

last week my GP sent me to hemato-oncologist to rule out "myeloma" or "lymphoma" or whatever like that .. and the oncologist also told me, that my symptoms are typical for MS - and - even if the results will prove the lymphoma or whatever - this would not explain my neurological symptomatology ...
SO - I am lost again ..

so - please - has anyone any suggestions / experience ??
thank you, a.

[Snoopy]

Originally Posted by alena

I have elevated levels of IgG antibodies / 4 oligoclonal bands in CSFluid ..
+ my blood tests showed some autoimune problem

I am not in the medical field, just someone who has MS.

The results of your LP would make me believe it's MS - the IgG levels and o-bands are what is looked at for a positive MS LP.

When you had your MRI was it done with/without contrast and also did you have a MRI of your Cervical Spine? L'Hermittes means something is going on in the cervical spine but L'Hermittes can be caused by something other than MS.

It's also possible that your dealing with more than one problem.

[clouds z]

maybe its something you eat

do you eat aspartame? or hyrdrogenated oils?

[annelb]

I am sorry that you remain in "limboland" a very frustrating place to be.

Have you had your B12 level checked? Even if it is "normal" you may still be deficient. I had (have lost touch) a friend who was diagnosed with MS and it turned out what she truly had was dangerously low B12.
Vitamin B12, demyelination, remyelination and repair in multiple sclerosis
http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum

If they are testing for MS, did they test your vitamin D level too.
The role of vitamin D in multiple sclerosis
http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum

Don't overlook the possibility of Lyme disease or celiac disease either. There is a secton on MS, Lyme and CD in The Gluten File. This is really a part of The Gluten Sensitivity/Celiac Disease forum here on BT2. http://jccglutenfree.googlepages.com/multiplesclerosis

Hope you find answers.

Anne

[alena]

hi,
thank you all for your responses,
and annelb for the b12 info ..
I appreciate any idea ..

take care,
a.

[BlackRoze]

Originally Posted by alena

hi again, I was visiting the "original Braintalk forums" - I did not post much, because my English is very often not good enough to "let me say what I really would like to say" .. so I was mostly just browsing and looking around .. and I am glad to have found this "new" BrainTalk again ..

there is a few new things about me .. but I am still in limbo ..

briefly:
- I have had many MS symptoms for a couple of years, getting worse, but no attacks (fatigue, muscle weakness, tingling, pareshesias, L´hermite, dizziness ..)
- plus I also suffer from some other symptoms that - as my docs say - have nothing to do with MS - e.g. constantly moving/wawing/oscillating vision, swolen lymph nodes, myoclonus/muscle jerks, tinnitus, constant burning feeling in my muscles/skin (??) in hands, around stomach, neck ..etc.
- my docs keept telling me for many years that my problems are just "psychological" - so there "was no need" to do any serious examinations/tests etc.. - so I was treated as a hypochondriac for about 9 years ..

this summer I finally found a new neurologist, who sent me to the hospital to prove/rule out something - susp. MS - so I finally went through MRI, EP, Lumbal Puncture etc .. ... which I was really happy about ..

but - the results did not help me much to get out of the "limboland" - because the MS has not been proved ... because there is no evidence of anything anywhere but the spinal tap:

I have elevated levels of IgG antibodies / 4 oligoclonal bands in CSFluid ..
+ my blood tests showed some autoimune problem,

+ I have no reflexes on the left side of "abdomen area" (I do not know the proper name of the reflex, it should be present when skratching with e.g. pencil on the "around stomach" skin)

the result that my docs told me was: we do not know ... and told me that I would just have to wait - at least a year, may be ten years - until "something happens" ...

so I am much more hopeless now then before - the only difference is, that before going to hospital I only felt - and now I am sure - that there is something wrong - but the neurologists now say "this is not neurological" problem - but all the other doctors keep sending me to the neuro back again .. etc..

last week my GP sent me to hemato-oncologist to rule out "myeloma" or "lymphoma" or whatever like that .. and the oncologist also told me, that my symptoms are typical for MS - and - even if the results will prove the lymphoma or whatever - this would not explain my neurological symptomatology ...
SO - I am lost again ..

so - please - has anyone any suggestions / experience ??
thank you, a.

Boy oh boy does this sounded like what i went threw before they found my Lyme's disease.. Still to this day I'm fighting this, who would have ever thought something so little could tear a life apart, not i thats for sure. Only took 8 years to find it. Instead i had doctors tell me " your a mother what you expect" when i went from a hyper person to not being able to hold my eyes open. From a body build to almost non walking in 8 years, but they believe i have had Lyme's for over 20 plus years, then was re-exposed to it. who knows now days. I just think it is important to be tested, but even then it's not fail safe testing. Meaning the test are not always right. I had 6 negatives, then 7, 8, 9 was also positive. MRI also showed it in the brain stem platelets. Which is long exposure to Lyme disease can cause.
I do wish you the best luck, and hope for you it's not Lyme's.

Fighting to get threw a day, but always keeping hope for a Cure.

[ConsiderThis]

Originally Posted by BlackRoze

Boy oh boy does this sounded like what i went threw before they found my Lyme's disease.. Still to this day I'm fighting this, who would have ever thought something so little could tear a life apart, not i thats for sure. Only took 8 years to find it. Instead i had doctors tell me " your a mother what you expect" when i went from a hyper person to not being able to hold my eyes open. From a body build to almost non walking in 8 years, but they believe i have had Lyme's for over 20 plus years, then was re-exposed to it. who knows now days. I just think it is important to be tested, but even then it's not fail safe testing. Meaning the test are not always right. I had 6 negatives, then 7, 8, 9 was also positive. MRI also showed it in the brain stem platelets. Which is long exposure to Lyme disease can cause.
I do wish you the best luck, and hope for you it's not Lyme's.

Fighting to get threw a day, but always keeping hope for a Cure.

Hi Black Roze,

I'm so sorry to see that your mood is sick. Darn it!

(((((((((BlackRoze))))))))))

I was just looking at some photographs that you posted in one of the forums... and enjoyed them so much.

Here I was picturing you doing really well. I guess I didn't look at your mood that day.

I know we've posted to each other before... but I can't remember about what...

Do you take Methylcobalamin at all?

I had tetanus which is a Central Nervous System disease, and I also lived in hydrogen sulfide which did a lot of nerve damage...

the B12 that I take helps a lot. I still have trouble with numb toes and sometimes feet... but over all I've greatly improved.

If you're not taking it... which seems unlikely given that so many people talk about it... why don't you get the 5mg Methylcobalamin lozenges and try disolving about three of them under your tongue every day for ... I'm so tired (but can't sleep... I have the wrong strength melatonin...) I can't figure this out... Okay, for three days, then two a day for three days, then hopefully you're going to be feeling a difference... and maybe go to one a day...

Keep notes each day, so you can see and go back and look at what it did...

((((((((BlackRoze)))))))))

[ConsiderThis]

Hi alena,

I'm so glad you joined the forum.

I have a really neat article that I found on the internet about people who had many symptoms of MS, but then were given a course of B12 replacement therapy and recovered...

I think that if you google "Dr. Chandry B12 Durham" that you might get the article... I'll go try it... Nope... that didn't work...

Here's the link I used on my site... let's see if it works...
http://www.thenorthernecho.co.uk/fea...ur_of_love.php

Yes, that works, read the article. I LOVE the article!!!!!!!

[rose]

Alena,

Please do take the B12 deficiency possibility very seriously. Untreated advanced B12 deficiency can mimic MS because it can cause the same damage.

And, although not everyone with serious damage due to B12 deficiency has L'Hermitte sign, it often occurs in long-untreated cases. The list of possible symptoms with B12 deficiency is bafflingly long, and presence or absence of any symptom or set of symptoms cannot rule out deficiency. It eventually affects every cell in the body to one degree or another.

Please read my website. It won't take long, and it will provide some very important basic information most docs do not have (because they are decades behind). And most of the information is in plain language, along with some quotes and links to medical literature.

I incurred unnessary central nervous system damage because of late diagnosis. Damage continues until treatment with adequate amounts of B12.

And addition to all of that, the methylcobalamin form of B12 has been shown to help some with ALS and MS even when there is no general B12 deficiency.

rose

[michael178]

limboland is not a bad place. I went from there to adult onset of unknown leukodystrophy, then to cadasil disease, a fatal untreatable genetic disease. I wish I were back in limbo, and I think most people who finally get Dx"d would go back too. Not knowing what you have isn't bad either, it is more than likely that most of things that await you are untreatable, and all you end up with is the name of a disease that is hard to explain,and hard to pronounce, i.e. the long name of what I have is "cerebral autosomal dominant arteriopathy with subcordical infarcts and leukoencephalopathy"
So, like so much else, be careful what you wish for, your wish might be granted. A little frustration in life is lot better than a lot of disease.