I think I have MS

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

I think I have MS

Postby b88b » Tue Dec 25, 2012 4:30 pm

Hi everyone.

I think I have MS.

I have a variety of symptoms including:
widespread pain
extreme fatigue
my arms often "don't work"
clumsiness - I drop things, walk into doors etc
my muscles twitch (my tongue has been twitching for months and various other muscles twitch every day)
confusion, inability to cope with stress, cognitive difficulties
pin prick feelings on my palms, soles of my feet and my tongue
headaches often (sometimes brought on by emotion)
tinnitus
sleep problems including sleep paralysis and poor quality sleep
a rushing noise in my ears when I stand up
and recently, facial paralysis (which thankfully has now passed)

From what I've seen online, I'd say I'm about 95% sure this is what I have.

I've seen a neuro, a rheumy and an M.E. specialist. Everyone seems to think I have M.E.

My neuro ordered an MRI which came back clear, so as far as he is concerned I don't have M.S.

However, from looking at the boards it seems I probably should have had more tests. My MRI should have included contrast - is that right? It didn't - it was a standard MRI. I've also not had a spinal tap.

I don't want to be one of those people who self-diagnoses online (although I realise that's what I'm actually doing!) but if I'm right and I do have MS then it answers many other queries too. I've had a prolapse in the last 12 months, I have longstanding bladder and bowel problems and I have a heart murmur and irregular heart beat. I also have pain in my abdomen which I've been describing for years as feeling like I'm wearing a girdle. It's really tight and all around my abdomen, up to my chest.

Am I right in thinking all of these things 'fit' with a diagnosis of MS? Am I also right in thinking I should be pressing my doctors for an MRI with contrast and a spinal tap?

To be honest I don't want to go back to the same neuro because if he hasn't ordered me the right test in the first place then I'm thinking he's not someone I want to have looking after me in the long term if I am diagnosed! I may ask my doctor to send me to another specialist.

I'd be grateful for any comments.

B.

PS my eyesight has also become increasingly blurred recently, although like everyone else I am getting older! and I suffer from migraines and (recently) this awful pressure like headache which feels like someone is blowing a balloon up in my head!
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Re: I think I have MS

Postby jimmylegs » Tue Dec 25, 2012 4:41 pm

hard to say what might be causing your issues, b, however, i can go through your issues and link up to potentially suspect nutrients. there're a bunch of nutrients that are off in ms patients but only a couple (like b12, d3) are on the mainstream docs' or even the specialists' radar. fortunately the info is all there in the research however. we are lucky to have access to online research. the lag between research and practise is still creaking its way out of a multi decade phenom into hopefully a slightly quicker turnaround.

that said.

pain - look at serum vit d3 and magnesium. please clarify, muscle, joint, bone pain or all of the above?
fatigue - consider testing serum ferritin and magnesium
would you call the arms not working and clumsiness 'sensory ataxia'? look it up and let me know. if so, consider looking at your vitamin E status. if it's just weakness, consider testing vit b12. if it's both, test both.
muscle twitching - serum magnesium could provide useful info
confusion - consider testing serum zinc and serum vit b12
headaches/emotion - possible magnesium conneciton
tinnitus - possible zinc connection
sleep issues - possible magnesium connection

also consider omega 3 status - deficiency has been linked to 'numbness, paresthesia, weakness, inability to walk, pain in the legs, and blurring of vision'.

nutrient issues common to ms patients include vit b12, b complex, vit d3, vit E, magnesium, selenium, zinc, omega 3 fatty acids, etc. lots of supporting research.

evaluating diet and current status could provide useful info. my 2c!
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Re: I think I have MS

Postby MarkLavelle » Wed Dec 26, 2012 12:23 am

1. If all or most of those symptoms are caused by MS, there is a >95% chance that an MRI would have shown the lesions characteristic of MS (and from your description it probably would have shown a *lot* of them).

2. Contrast is irrelevant in terms of *detecting* MS lesions -- it only indicates which of the lesions are currently inflamed.

RRMS dx 3/3/11; Copaxone since 12/1/11
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Re: I think I have MS

Postby b88b » Wed Dec 26, 2012 3:26 am

Thank you jimmylegs and MarkLavelle.

jimmylegs - I get primarily what feels like muscle pain but I'm not sure. It's just sort of 'there' in my back and abdomen etc. I also have recently had pain in my jaw which felt like the bone itself was hurting (although I know that's not possible) and I think was connected to the facial paralysis. I get 'shooting' pains too, passing between what seem to be unconnected parts of my body. For example, I'll feel it start in my abdomen and it might shoot down my thigh, or something like that. I'm not sure about sensory ataxia. I do notice that when my eyes are closed I'm not really still. I shake a little and sometimes sway on the spot. That does happen often when I have my eyes open too - at work the other day I had to hold on to the photocopier to steady myself! Do you think my symptoms 'fit' with MS?

MarkLavelle - do you think something other than MS could be causing my symptoms? Or may I be one of the 5%? If so, how am I supposed to get on the right treatment path? Is that ever possible when an MRI doesn't show lesions?

Thanks both again for your replies.

B.
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Re: I think I have MS

Postby jimmylegs » Wed Dec 26, 2012 7:08 am

hey there, bone can hurt too :)

hmm ever had a cold sore? just thinking out loud here...

it's hard to say what symptoms fit with ms. there are so many conditions with similar symptoms. what do you deal with specifically, that makes you think this can only be ms?

one important treatment path, and this is just my opinion, is to get nutritional testing regardless of any diagnosis, and correct any problems you find. read this for an idea of what to look for and what to aim for. if you need supporting scientific abstracts to take to a health professional i can link you up. also never let them tell you a nutritional test came back 'normal'. that's far from good enough. you need to be 'optimal' to reduce risk of illness.

hth!
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Re: I think I have MS

Postby b88b » Wed Dec 26, 2012 8:19 am

jimmylegs wrote:what do you deal with specifically, that makes you think this can only be ms?


It's mostly the fact that it seems to explain all of my current symptoms and answer all of those seemingly unrelated questions too, like why did I have a prolapse and facial paralysis, why do I suffer from sleep paralysis, alcohol intolerance and pain which feels like I'm wearing a girdle, and why has my eyesight deteriorated so rapidly over the last year or so. It seems to explain everything, whereas no other explanation I've been offered (i.e. M.E.) does.

I'm going to make an appointment to see my doctor tomorrow and ask for a LP to be arranged.

Thank you so much for taking the time to reply. I really appreciate it.

B.
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Re: I think I have MS

Postby jimmylegs » Wed Dec 26, 2012 9:16 am

np re replies. although i may be going somewhat dark soon. moving to a place with no ready access.

what kind of prolapse? i haven't really heard much about sleep paralysis when it comes to ms. found one case study which mentioned resolution of sleep paralysis in an ms patient
"Pineal melatonin and monoaminergic neurons have been implicated in the induction and maintenance of REM sleep and the pathogenesis of sleep paralysis and it is suggested that resolution of sleep paralysis in this patient by AC pulsed applications of EMFs was related to enhancement of melatonin circadian rhythms and cerebral serotoninergic neurotransmitters."

i don't know how many of us have alcohol intolerance but i don't hear it as a regular complaint. eyesight yes, girdling pressure if not pain exactly, but it's hard to say.

now. what about those cold sores?

from recent chat
general-discussion-f1/topic21312.html#p201604
"it's key to separate the influence of light period, from the influence of vitamin d3. what the uv light is doing for symptoms is possibly related moreso to melatonin and hippocampal neurogenesis than straight vit d3.
http://wolfweb.unr.edu/homepage/vpravos ... memory.htm
ms patients have characteristic hippocampal atrophy, and the eae virus attacks and kills murine hippocampal pyramidal neurons.

dietary tryptophan is a key ingredient for melatonin production."
http://www.whfoods.com/genpage.php?tnam ... t&dbid=103 (chicken soy tuna turkey venison etc)

as for sleep issues and nutrition, here's a very good table showing differences between nutrient intakes in patients w insomnia vs controls w normal sleep. just to demonstrate that nutrition does play a role in normal healthy sleep.
http://synapse.koreamed.org/ViewImage.p ... n=_0161NRP

anyway. all that said, it sounds to me like you're not ready to take the importance of nutrition on board. imho it's pretty key to surviving ms if you have it, and pretty key in reducing risk of disease in general if you don't have ms. so if you come back to the idea of it in future feel free to ask any questions you may have.

fyi: do search the forum for terms like
post lumbar puncture postural migraine needle bevel
and that sort of thing. prior to going for the LP.

happy hunting! hope you get some answers
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Re: I think I have MS

Postby b88b » Wed Dec 26, 2012 10:08 am

jimmylegs wrote:what kind of prolapse?


Rather embarrassingly, a vaginal prolapse. I'm 35. My doctor said they most commonly occur in people over 50.

I read (here: http://www.cigna.com/individualandfamil ... v1000.html) that women with MS are more likely to have them.

There have been so many things in the last 12 months or so which have happened to me, seemingly separately. It's too much of a coincidence for my liking.

jimmylegs wrote:now. what about those cold sores?


Thankfully, I've never suffered from those!

B.
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Re: I think I have MS

Postby b88b » Wed Dec 26, 2012 11:20 am

jimmylegs wrote:would you call the arms not working and clumsiness 'sensory ataxia'? look it up and let me know.


I've looked into this a bit more and found the Romberg Test. I've just tried it, for a minute with my eyes open (I was a little wobbly but ok) and then again with my eyes closed. I didn't make it many seconds before I stumbled. So, yes. It looks like it. I didn't realise I was quite as wobbly as that!
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Re: I think I have MS

Postby MarkLavelle » Wed Dec 26, 2012 12:44 pm

b88b wrote:MarkLavelle - do you think something other than MS could be causing my symptoms? Or may I be one of the 5%? If so, how am I supposed to get on the right treatment path? Is that ever possible when an MRI doesn't show lesions?

I wasn't thinking of any particular explanation(s), just that the problem with "MS symptoms" is that *all* of them can be caused by something else. That's why the MS diagnosis process is supposed to include eliminating all the other possible causes.

Personally, I think that different symptoms should be assumed to have different causes until shown otherwise (even if only by process of elimination). In terms of probabilities, a single cause is usually the least likely explanation for otherwise unrelated symptoms (especially in your case where the MRIs don't back up an MS diagnosis). Yes, 5% is not nothing, but trying to fit yourself into that small slot can take years before doctors are 'sure', and ignoring the alternatives could make non-MS problems worse while you are overlooking the real causes.

My PCP is an internist, but my physiatrist (who I've been seeing about back problems for years before my MS) has been my go-to guy for initial evaluation of nerve-related stuff. He's the one who said the paresthesia in my legs didn't fit in with my musculoskeletal problems and sent me to a neuro and my eventual diagnosis. Since then he's been very good about identifying the neural vs. physical, even as both have evolved.

Getting your vitamins/nutrients checked is also very important, but consider trying a physiatrist, too...

http://www.aapmr.org/patients/aboutpmr/ ... trist.aspx

RRMS dx 3/3/11; Copaxone since 12/1/11
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Re: I think I have MS

Postby b88b » Thu Dec 27, 2012 6:32 am

Thanks MarkLavelle. I've seen my doctor again today and have asked to be referred to another specialist. Hopefully I'll get some answers soon.

All the best for the New Year and good health to you!

B.
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