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desperate for help!!!

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Old 02-05-2005, 05:22 AM   #1
Join Date: Jan 2005
Posts: 368
jellebeans HB User
desperate for help!!!

hi,im hoping somebody could please tell me if i have ms symptoms as ive been so ill now for 5 years and this last year been in pain everyday but my doctors say theres nothing wrong with me but i know there is.
it started 5 years ago with the occasional severe headache,dizziness which just became more frequent over time,after 3 years i then started to get chest pains and really bad crampy pains in arms and legs[more in legs]and the last year and half have just been the worst off my life,ive been in pain everyday for 95% of the day,not only do i have severe tension headaches i now get migraine and all sorts of pains in my head shooting/stabbing and the real feeling of something being in my head,dizziness is terrible,severe pain behind my eyes,shooting pains in neck and legs,ears feel blocked and im generally real tired and have no eyes also sometimes appear droopy and occasionaly see double and blurry vision.ive had clear scan to rule out tumour and ive always thought i have an aneursym in my brain and if honest i still do however my doctor thinks im worring for nothing.ive been told ms could possibly be this symptoms,does anyone have this??? im desperate for answers to help my pain,im 27 years old and dont want to live like this anymore,please help x

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Old 02-05-2005, 07:01 AM   #2
Join Date: Jan 2005
Posts: 307
Arraicha HB User
Re: desperate for help!!!

No, that doesn't sound like MS at all. MS starts off by having a weird neurological symtom for awhile, then it goes away. A certain time later, it or something else weird comes back. There can be pain involved, but not like you're experiencing. There is progressive MS, but it's quite rare and I'm not very familiar with it. From what I know in MS though, pain is secondary to loss of sensation and loss of movement. You're having pain without significant other symptoms.

I have no idea what it could be. Psychosomatic disorders come to mind. Have you been very stressed, unhappy over the last 5 years? Otherwise, I can't help, I'm sorry .

Old 02-05-2005, 07:20 AM   #3
Join Date: Nov 2003
Location: Durango, Colorado
Posts: 1,443
Jewel2 HB User
Re: desperate for help!!!

I'm sorry to hear of your pain.

MS usually presents itself differently that what you describe. Headaches can be part of MS - my mom has severe migraines because of her MS. My daughter experiences pain with her MS, both nerve pain and cramping, but not to the degree you describe. Pain behind the eyes is common with MS, but usually there is also visual disturbance. And dizziness is very common with MS.

Usually MS attacks come and go with a remission in between, although primary progressive can be relentless. It is very uncommon, though.

It sounds like you need to go to a good neuro or internist who will run a battery of tests to find out what is going on.

Best wishes,

Old 02-05-2005, 12:51 PM   #4
Senior Member
Join Date: Mar 2003
Location: Cranbury, NJ
Posts: 219
SuzU HB User
Re: desperate for help!!!

Okay-here's what I can offer from the research I've been doing. I'm seeking a diagnosis presently as well, but in the meantime I have lots of down-time to try and educate myself!
Fibromyalgia is a syndrome that can mimic MS, but the main symptom is usually pain. (It doesn't necessarily HAVE to be pain-but since you have pain, it bears looking into. It can only be ruled in once everything else is ruled out.
You also mentioned painful jerks or twitches ( I think...) This is very characteristic of a syndome called benign crampy fasciculation syndrome, which causes painful twitches all over your body and can leave you exhausted. In order to get this diagnosed, you need to see a neurologist and have an emg to rule out other causes of twitches such as ALS. Considering your age and that you don't report any major weakness, I would say it is highly probable NOT to be ALS. (So don't even give it a second thought.) You mentioned double vision and droopy eyelids-these are characteristic of Myasthenia Gravis. Has anyone ever worked you up for this?
Also-have you had blood work to rule out an electrolyte, nutritional imbalance? Potassium and Calcium deficiencies come to mind. Also get a B12 level in addition to tests for Lupus, Lyme, thyroid disease, viruses like Epstein Barr-you could have a post viral syndrome. Did you say you'd had a brain MRI? This would rule out MS, tumors, other things of that nature, though MS doesn't always show up on the brain MRI in a few cases. Next I would try to get an MRI of the spine. Neck injuries can cause twitching, dizziness, headaches and chest pain, even facial and eye symptoms! (These are similar to my symptoms as well-that's how I know.)
None of these things are fun to deal with, but there is hope and treatment once you have a diagnosis. I would suggest making an appt at a major University Hospital and go from there. Specialists to consider would be Rheumatology, Neurology, Endocrinology, and Internal Medicine.
Hoping you find answers and relief ever so speedily.

PS-Here is a chart I found on line that differentiates symptoms of Fibromyalgia from Chiari malformation (another treatable condition that could be picked up on a brain mri) and cervical spine compression (which could be caused by bulging or herniated discs, narrowing of the cervical canal, your basic bad neck injuries.)

Old 02-05-2005, 01:14 PM   #5
Join Date: Jan 2005
Posts: 368
jellebeans HB User
Re: desperate for help!!!

thank you for your help i will definatly look in to all of this,i have appointment at migraine clinic on tuesday so will ask what he thinks
thanks again x

Old 02-05-2005, 02:54 PM   #6
Join Date: Jan 2005
Location: Ashton ILL
Posts: 8
howlingwolves HB User
Unhappy Re: desperate for help!!!

size threeI have PPMS twenty years now,I have severe nerve pain 24/7/365 but I have finally got some relief from the fentenal pump,allow PPMS is very different from RR it is still hard to DX.I would find a good MS specialist witch may be very hard to do I wish you nothing but the best! Take Care Howlingwolves

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