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Anyone Been Diagnoses With Ms?


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25 replies to this topic

#1 retiredat44

 
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Posted 18 July 2010 - 10:27 AM

Anyone been diagnoses with MS? I have been going for some C&P exams, and while I was recently diagnosed with Dystrphy, I stil suspect I have MS, and am anxiously awaiting the outcome..

I would like to chat with those that have MS, or suspect they do..

thanx..

#2 WildBill

 
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Posted 20 July 2010 - 01:07 PM

Anyone been diagnoses with MS? I have been going for some C&P exams, and while I was recently diagnosed with Dystrphy, I stil suspect I have MS, and am anxiously awaiting the outcome..

I would like to chat with those that have MS, or suspect they do..

thanx..


Hi, I'm WildBill's better half. I log in to check things out. I hope y'all don't mind. I have MS, and have been dx for 10+ years. I wouldn't mind chatting if you think I could help you.

#3 vet12

 
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Posted 21 July 2010 - 11:38 AM

I was diagnosed with MS several years ago by a civilian doctor. I had a spinal tap and the results showed 3 times the protein that I was supposed to have. He wanted to put me on a monthly shot. However the VA doc said I didn't have MS.He said I had fibromylia (mispelled). I take a lot of pain meds for arthritis so I didn't take the monthly shot.

You may want to get a second opinion.
vet12

#4 retiredat44

 
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Posted 22 July 2010 - 07:38 AM

I am around often to chat.. maybe we could setup a time/date..
very thankful to chat..
thanx..

:smile:

#5 kaykay

 
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Posted 23 July 2010 - 06:19 AM

I have had MS for more than 30 years and would be happy to chat with you.

#6 retiredat44

 
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Posted 23 July 2010 - 03:00 PM

I have had MS for more than 30 years and would be happy to chat with you.



just let me know, any date, any time..
thanx..

#7 retiredat44

 
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Posted 27 July 2010 - 04:19 PM

I stil have no clue if my diagnosis more closely match Parkinson's or MS, but Myotonic Dystrophy just does nto match my symptoms as well as the others.. I really hope they diagnose me better..maybe my last Neurologist exam at my C&P exam wil be the best diagnosis. Parkinson's looks to be a good possiblity as I keep reading about it,, also some nurses that kept me alive for 6 months in the hospital bed at the VA asked if I had Parkinson's disease. I told them the doctors didn't know at that time..

now I read more about Parkinson's and don't think that the problem, because I seldom shake at rest, my shaking happens more when I move, also, I get violent jerking when I am at ful rest, usally in bed..

so I am back leaning more towards MS..

of course I am a sufferer of being a vicitm of illness from cheicals, Jet Fuels (JP-4) and also trichloroethylene from my jobs in the USAF. so the neurological diseases may have been affected and/or caused, exaserbated by these chemcials..

all in my USAF medical records when I was active duty.

Edited by retiredat44, 27 July 2010 - 04:34 PM.


#8 lizgwvet

 
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Posted 28 July 2010 - 08:59 AM

Anyone been diagnoses with MS? I have been going for some C&P exams, and while I was recently diagnosed with Dystrphy, I stil suspect I have MS, and am anxiously awaiting the outcome..

I would like to chat with those that have MS, or suspect they do..

thanx..

I've been diagnosed with MS since 2001, we have a yahoo group for gulf war vets and other vets diagnosed with MS it is a yahoo group MSVETS. Lots of good advice on this group and how to get SC for MS.
Liz

#9 retiredat44

 
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Posted 28 July 2010 - 03:12 PM

I've been diagnosed with MS since 2001, we have a yahoo group for gulf war vets and other vets diagnosed with MS it is a yahoo group MSVETS. Lots of good advice on this group and how to get SC for MS.
Liz


I tried to find it and join:


Group Not Found
There is no group called msvet. Please make sure you typed the web address correctly. If you have done so, the group may no longer exist.

You may also search or browse for groups on the Yahoo! Groups Home Page.
==========

I found and joined :
MultipleSclerosis-MS

I am not sure if you meant this group?

Edited by retiredat44, 28 July 2010 - 03:30 PM.


#10 lizgwvet

 
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Posted 28 July 2010 - 08:28 PM

I tried to find it and join:


Group Not Found
There is no group called msvet. Please make sure you typed the web address correctly. If you have done so, the group may no longer exist.

You may also search or browse for groups on the Yahoo! Groups Home Page.
==========

I found and joined :
MultipleSclerosis-MS

I am not sure if you meant this group?

this is the group

http://health.groups...m/group/MSVETS/



#11 retiredat44

 
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Posted 29 July 2010 - 09:01 AM

Thanx, I wil look into it :smile:


Edited by retiredat44, 29 July 2010 - 09:02 AM.


#12 retiredat44

 
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Posted 19 August 2010 - 07:55 AM

I continue to struggle with my neurological symptoms. I really truly think I have MS. The DX of Myotonic Dystrophy is just wrong IMHO. I have the symtoms of MS as far as al the studying I have done on al the information I have gone through..

I hope the C&P at least recognizes my neuro condition. But, I am not happy with getting the wrong diagnosis.

I looked at al the major neurological diseases.

My symptoms: tremors, shaking, pain, unbalanced, spasms, fatique, tiredness (exhaustion), neropathy, edema,
Intestinal disease, eye issues, spots in cornea (cataracts (one eye had surgery, other eye still has cataract), degenarative disc disease,
with no teeth (teeth were removed because intestinal disease destroyed them) my speech can have periods of time where speech can have problem, but usually when exhaustion sets in. Also, have been a chronic pain aptient for 20 years. Take morphine for constant body pain..
pain can be everywhere and overwhelimg. Also, I have migraine headaches often.

All this is documented..

Why can't they put the puzzle together..
Sometimes I feel they just refuse to give people the MS diagnosis.. why I don't know..

my VA disability claim 15 years ago was for headaches from the Jet-Fuel. I also claimed MS (Multiple Sclerosis) they gave me 50%. for headaches. But denied the MS.

:ph34r:

#13 tami

 
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Posted 19 August 2010 - 09:29 AM

I was recently diagnosed with MS, after about 6-7 years looking for an answer. It is a very difficult disease to diagnose because it mimics so many other diseases. I am service connected and currently rated at 30% for MS (90% overall) I would suggest going to a "civilian" doctor if you have access/insurance. They may be able to hopefully properly diagnose.

Although it really, really sucks to have the disease, it is almost a relief to have an answer, and that it is not "all in your head". The VA definitely didn't diagnose me, and i don't think they would ever have, it was me having an excellent neurologist who diagnosed me and sent me for 2 second opinions. They gave un-refutable evidence. ( I think 30% is ridiculously low but I am working on that.)

MS IS a huge puzzle and as soon as you put one piece in the right spot, you find another empty one:) I hope you get the answer to your illness. The sooner you start therapy the better.

Tami

#14 retiredat44

 
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Posted 19 August 2010 - 09:57 AM

Could you tell me more about the symptoms that you first noticed and how they progressed?

Thanx


I was recently diagnosed with MS, after about 6-7 years looking for an answer. It is a very difficult disease to diagnose because it mimics so many other diseases. I am service connected and currently rated at 30% for MS (90% overall) I would suggest going to a "civilian" doctor if you have access/insurance. They may be able to hopefully properly diagnose.

Although it really, really sucks to have the disease, it is almost a relief to have an answer, and that it is not "all in your head". The VA definitely didn't diagnose me, and i don't think they would ever have, it was me having an excellent neurologist who diagnosed me and sent me for 2 second opinions. They gave un-refutable evidence. ( I think 30% is ridiculously low but I am working on that.)

MS IS a huge puzzle and as soon as you put one piece in the right spot, you find another empty one:) I hope you get the answer to your illness. The sooner you start therapy the better.

Tami


Edited by retiredat44, 20 August 2010 - 05:02 AM.


#15 allan

 
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Posted 20 August 2010 - 01:22 AM

After more than a decade of being left with a diagnoses of, "Neuromuscular Disorder of Unknown Cause" I recieved during my C&P examination for Pension,(1997). I was diagnosed with MS during an IMO from a neuroradiologist in 2005.

During a resent C&P examination this last May, the examiner discovered that I have a neurological condition and advised I should followup with my PCP.

The VA also diagnosed me with having Traumatic Brain Injury, likely due to a toxin in 2000.
Other than muscle relaxants and break through pain meds I recieve no other treatment for MS or TBI from the VA. From what I see of all the recalls for the expermental drugs for MS they have, it looks like i'm not missing out on much.


#16 retiredat44

 
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Posted 20 August 2010 - 05:13 AM

I see the El Toro article:
http://www.veteranst...nwanted-legacy/
(which has already been listed in these forums..)

it tells about the toxic chemcials, some of which are the Jet Fuel and also trichloroethylene, both of which I was sick from on active duty and in my service medical records. I have been disgnosed with several diseases including Myotonic Dystrophy (from bases I was stationed at in the USAF), but they so far refused to say it's MS.. yet I have many diseases.. my C&P results might be ready soon, I had the c&p exams last month, and am awaiting the new rating.. Currently it's at 50% for just the exposure and headaches, but have added many more afflictions and diseases.. I got an IMO to and added it with my claim..
I am confused though why they didn't say it is MS, with so many miserable diseases and afflictions I suffer from..

That is why I would like to hear about what symptoms people felt, feel, and the progression of the health problems.. So I can understand what is wrong with me and to see if the VA has a clue, or if they are guessing..

Thanx,
:ph34r:

After more than a decade of being left with a diagnoses of, "Neuromuscular Disorder of Unknown Cause" I recieved during my C&P examination for Pension,(1997). I was diagnosed with MS during an IMO from a neuroradiologist in 2005.

During a resent C&P examination this last May, the examiner discovered that I have a neurological condition and advised I should followup with my PCP.

The VA also diagnosed me with having Traumatic Brain Injury, likely due to a toxin in 2000.
Other than muscle relaxants and break through pain meds I recieve no other treatment for MS or TBI from the VA. From what I see of all the recalls for the expermental drugs for MS they have, it looks like i'm not missing out on much.


Edited by retiredat44, 20 August 2010 - 09:20 AM.


#17 retiredat44

 
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Posted 04 January 2011 - 07:44 AM

I had a blood test to have my DNA tested for Myotonic Dystrophy.. the results should come any day now, I only just had the blood drawn yesterday, per a doctors request from a neurologist at the VA..

#18 allan

 
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Posted 04 January 2011 - 05:47 PM

Here's a couple things I found out about diagnosing MS.

They look for certain bands in the spinal fluid sample. But 20% of all MS patients show normal spinal fluid samples.
They also look for scatered lesions in the white matter with at least one lesion in the corpus callosum in your MRI.

Have they performed an MRI on you?

Check out this link for MS symptoms you may have.

Multiple Sclerosis Symptoms
http://www.mult-scle...mssymptoms.html

Allan


I had a blood test to have my DNA tested for Myotonic Dystrophy.. the results should come any day now, I only just had the blood drawn yesterday, per a doctors request from a neurologist at the VA..



#19 retiredat44

 
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Posted 06 January 2011 - 07:34 PM

Here's a couple things I found out about diagnosing MS.

They look for certain bands in the spinal fluid sample. But 20% of all MS patients show normal spinal fluid samples.
They also look for scatered lesions in the white matter with at least one lesion in the corpus callosum in your MRI.

Have they performed an MRI on you?

Check out this link for MS symptoms you may have.

Multiple Sclerosis Symptoms
http://www.mult-scle...mssymptoms.html

Allan





many years ago they did MRI on my brain. I have had amny MRI on m y spine.. but just a couple days ago they took blood to do a DNA test for Myotonic Dystrophy... results are not yet back..

#20 retiredat44

 
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Posted 24 March 2011 - 05:52 PM

I had another neurology appt with the VA neurologist..
he gave me a hours worth of tests...

he had gotten some dna tests of mine for dystrophy, but had no yet investgated the results... they stil have no firm diagnosis,, but one doctor gave ma a diagnosis of Myotonic Dystrophy, other doctors are thinking other diseases...

tremors, shaking, involuntary movements convulsive muscle movements, bad balance for standing and walking, pain, swelling (edema)... loss of control of arms, hands, fingers,, left side much weaker than right side.. with muscles that atrophy (wasting)

I had many more tests that I never had before.. some with intruments, others just with moving parts of my body to certain directions and positions..

If I read the descriptions for ALS, MS, and, Muscular Dystrophy, my symptoms have some of each...

currently my claim has myotonic dustrophy, int he 1990's I filed for MS, but was denied,, this is the closest I have come to a firm diagnosis...
again, this is for only one of the many conditions of my claim...

I am so frustrated about not getting an absolute firm diagnosis,,
the doctor wants me to be a seen by neurology as a permanent patient in the clinic... until now it was not often...

I wil be going back to Inderal, along with Clonazepam (Clonazepam really helps me a whole bunch) when I used to take Inderal, I really didn't see much difference, but that was more than 20 years ago..

#21 WAC-Vet75

 
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Posted 24 March 2011 - 06:33 PM

I was finally dx'd with MS back in 1997, and I was able to have it sc because I showed the signs back in the 1970's. The VA has come a LONG way in their treatment of MS'ers, but you have to get a Neurologist that actually listens (usually difficult to find in the VA system). I just recently, 2010, got a VA Neurologist that I like, listens to me, and actually seems to care. I stopped going to the VA or anyone, for that matter, for 10 years 1) out of an intense dislike for my VAMC's Head Neurologist (left a sour taste in my mouth for all Neurologists) 2) Denial that I had MS (took me longer than most to finally accept it). I know the testing is a royal pain in the a$$, but let them do what ever is needed to figure out exactly what you have, then take an active role in your treatment!! Times have changed and you are allowed to be active in your treatment!

#22 retiredat44

 
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Posted 28 March 2011 - 09:15 PM

My left arm and left hand are the weakest..
My left arm has had more pain and numbness.
my left legg and foot had the most problems
The doctor didn't understand why my left arm was flapping like a bat when he had me walk on my heels.. (I warned him I would fall) and I did grab the desk after a few steps..

My left arm is a combination of numbness and pain...

I have been asking for help for it for 30 years...

In 2008, I had lost the ability to walk,, and I could barely speak when I lost my muscles, I could not speak loud enough fo rpeople to hear me..
then I was able to walk again witrh lots of therapy.. but,, the left arm seems to be going downhill faster...

the Cloneazepam has helped me a whole bunch and stopped the leg kicks and muscle twisting of my l eft foot... espcecially at night,, I onlyhad one attack during the day a few weeks ago.. the twisting of the foot muscles by the toes causes athe bones to dislocate and it hurts so bad I scream,, and it can last for around 15 minutes or more while the muscles twist..

I wish all the doctors would all agreee on some diagnosis.... as it is now my claim if for dystrophy,,, in the 90's I claimed MS, but could not get much help from neurolgists... I felt they wer enot interested and just tried to get rid of me,, they would only say I had tremors,, but now I feel like I could lost the ability to move parts of my body....not sure when that might happen... I hope this numbness and pain lets up... sometimes I wake up and my left arm hurts pretty bad...
at least I am right handed..

I am very glad I saw doctors on active duty and they prescribed medicine for the tremors, so at least it was well documented..

waiting for the claims to finally get through the appeal stage while stil getting dianosis is hell...

the neurolgogy issues are only two out of six medical issues I am claiming..

I was finally dx'd with MS back in 1997, and I was able to have it sc because I showed the signs back in the 1970's. The VA has come a LONG way in their treatment of MS'ers, but you have to get a Neurologist that actually listens (usually difficult to find in the VA system). I just recently, 2010, got a VA Neurologist that I like, listens to me, and actually seems to care. I stopped going to the VA or anyone, for that matter, for 10 years 1) out of an intense dislike for my VAMC's Head Neurologist (left a sour taste in my mouth for all Neurologists) 2) Denial that I had MS (took me longer than most to finally accept it). I know the testing is a royal pain in the a$$, but let them do what ever is needed to figure out exactly what you have, then take an active role in your treatment!! Times have changed and you are allowed to be active in your treatment!



#23 WAC-Vet75

 
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Posted 29 March 2011 - 12:25 AM

Retiredat44..... I learned about the cloneazepam by accident. I was prescribed them for anxiety, but they doped me up and put me to sleep. The night jerks (yep, I get them also) were so bad, I couldn't get sleep. I took a clonezepan, out of total desperation for sleep. My night jerks stopped. I didn't take it, and the night jerks came back. I told the Neurologist about it, and he said it made sense as they (clonezepam) were used for seizures!

Your speech.....when you talk, do you feel like your speaking in a normal voice? I swear I am, yet people have difficulty hearing me most of the time. I get spasticity, then my voice is so hoarse, and have totally lost it many times. I think that is my greatest fear, losing my communication skills.

What you describe, sounds soooooo much like what I go through. Most of my problems are on the left side also, and that's my dominate side. The spasm was so bad in my left leg, it pulled my left foot so far that it looked like the ankle was broken, now I have spastic equinovarus foot deformity (minor, could be worse).

I am so sorry that they have been shuffling you around. Look up the McDonld criteria for MS, see if you fit the criteria. I know you don't want to have a disease, but the relief of knowing WHAT you have, does help. I just spent the last 10 years lying to myself. I blamed all my symptoms on anything and everything else I could. I tried very hard to prove the Doctors wrong, but I've been on a downhill slide for a little while now, and it's getting too difficult to find excuses. It was learning about the McDonald criteria, that finally made me face reality.

I hope you get the answers you need, and please keep me abreast of how you are doing...... hugs to you!

#24 retiredat44

 
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Posted 29 March 2011 - 11:43 PM

Many years ago, 1980's I had MRI's (or were they Cat scans...) anyways, I had them for my headaches when I got sick from chemicals on active duty..
in the later years I had too many mri's and cat scans to list...
the doctors are kinda freaked out because I have been sick so mnay times, they said I have probably bene exposed to way to much radiation..

I am not sure if all my brain cat scans show lesions.. they are in my records going back for 35 years...

I would have to tro to read the records... not sure if they show legions.. they did decide that I indeed had severe headaches while taking the tests...

not sure if they have any later brain cat scans, as most were for my spine , pancrease, liver.. and sinuses...

lungs too because of diseases..

I guess the neurolgists will let me know what they have and what they need now they are helping me much more now than ever..


Retiredat44..... I learned about the cloneazepam by accident. I was prescribed them for anxiety, but they doped me up and put me to sleep. The night jerks (yep, I get them also) were so bad, I couldn't get sleep. I took a clonezepan, out of total desperation for sleep. My night jerks stopped. I didn't take it, and the night jerks came back. I told the Neurologist about it, and he said it made sense as they (clonezepam) were used for seizures!

Your speech.....when you talk, do you feel like your speaking in a normal voice? I swear I am, yet people have difficulty hearing me most of the time. I get spasticity, then my voice is so hoarse, and have totally lost it many times. I think that is my greatest fear, losing my communication skills.

What you describe, sounds soooooo much like what I go through. Most of my problems are on the left side also, and that's my dominate side. The spasm was so bad in my left leg, it pulled my left foot so far that it looked like the ankle was broken, now I have spastic equinovarus foot deformity (minor, could be worse).

I am so sorry that they have been shuffling you around. Look up the McDonld criteria for MS, see if you fit the criteria. I know you don't want to have a disease, but the relief of knowing WHAT you have, does help. I just spent the last 10 years lying to myself. I blamed all my symptoms on anything and everything else I could. I tried very hard to prove the Doctors wrong, but I've been on a downhill slide for a little while now, and it's getting too difficult to find excuses. It was learning about the McDonald criteria, that finally made me face reality.

I hope you get the answers you need, and please keep me abreast of how you are doing...... hugs to you!



#25 WAC-Vet75

 
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Posted 31 March 2011 - 12:40 PM

Retiredat44, I just found out about something called Bioness L300 for footdrop, and the VA DOES supply it! I'm going to ask my Neuro about it, as the foot drop is getting much worse. Right now, all my symptoms are progressing at a rapid race, and I've been caught "off guard" by it. Thankfully, my Neuro changed my appointment to tomorrow, instead of the 28th!!!!

#26 retiredat44

 
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Posted 10 June 2012 - 11:07 PM

Here's a couple things I found out about diagnosing MS.

They look for certain bands in the spinal fluid sample. But 20% of all MS patients show normal spinal fluid samples.
They also look for scatered lesions in the white matter with at least one lesion in the corpus callosum in your MRI.

Have they performed an MRI on you?

Check out this link for MS symptoms you may have.

Multiple Sclerosis Symptoms
http://www.mult-scle...mssymptoms.html

Allan

My VA Neurologist kept doing/taking tests,,(he also has bene subsribing me proponolo and Cloneazepam) and calling in his superiors to checks me... then, last week they did a new brain MRI to check to see if that will tell them more of what i suffer from....

so, hopefully, later this coming week the Brain MRI will show if it is MS..) in about 1981 I had an MRI of the brain for trmeors, headaches, and ote rproblems on active duty from chmicalc exposure. Over the last few years the doctors and nurses have noted al the neuro problems I suffer from, including periods of time where i am unable to care for myself because I lose ocntrol of muscles, arms, legs, hands, speech..

I had lost most of my ,uscles and weight becaus eof pancreas disease, and was even diagnosis with mytonic dystrophy when that was severe.. but the involuneteray movements and intestinal disease, balnce, gait, enuropathy numb limbs... swollen limbs.. and hte list goes forever... maybe the brain MRI wil help clear up what helse is wrong,,

then I can add the diagnosis to my current claims... (during or after the appeals.. I don't want the appeals to be stopped... only if thye can be added before they make new decsions..