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    • A bit about Tbird and HadIt.com for those who've asked...

      The following is on my About page, but some have been asking how this all happened. So here is my little story. Tbird US Navy 1983 – 1990 E-6 HadIt.com the website domain registered Jan 20, 1997 the domain is registered and paid for through Jan 21, 2023 at which time I plan to register it for another 15 years Lord willing and the creek don't rise. I guess the best place to start is Jan 1991; I had gotten out of the navy Dec 1990. At my separation seminar, there was a DAV rep Jim Milton he told us to bring our medical records in and he would look through them for us and let us know if we should file a claim with the VA. Well, bless his heart, he opened my medical file, reads the first insert, looks me straight in the eye, and says you will be 50% for the rest of your life and he would file the claim for me. 50% was for surgery I had in the service. True to his word he met with me and talked with me for a long time filled out my paper work and urged me to file for PTSD. I would not file the PTSD claim, nor even discuss it. By Feb 1991 I had moved to the San Francisco bay area and was staying at a friends apartment and pretty much I was just a puddle. In desperation one night I called suicide hot line, I had no job, no idea about going to the VA. They talked with me for a long time and explained to me that I could go to the local VA hospital even if I did not have insurance. Now, I know what you are thinking if I was 50% why didn't I just go to the VA in the first place, two reasons 1, this was Feb 1991 and the 50% didn't come till May and 2, even if it had come through it is unlikely that I would have had the mental acuity at the time to put the two together. I relate this here because it is where so many of our brothers and sisters are coming from, perhaps where you started. Fuzzy and unsure, in pain and sometimes homeless they come to the VA hospital for help. And that is where I ended up. Up to the pysch ward I went, blah, blah, blah, a few days later I was released with a promise of a call from the out patient program, which I would soon be entering. Blah, blah, blah, after many missed communications, and no call backs I was at the Day Hospital everyday M-F. And this brothers and sisters is where I began to learn and formulate my plan for HadIt.com. Veterans, veterans everywhere…I spent a year in the day hospital and about another year at a sheltered workshop before I got back on my feet. So I just talked to veterans everyday waiting for appointments, waiting for prescriptions, waiting for a vet rep and I started to learn the system. While in the navy I was data analyst and had to learn a 5 volume manual and just about anything you were suppose to do was in that manual. So I figured there must be a manual on how to do a VA claim or at the very least regulations. So I found out about the Code of Federal Regulations, United States Code, Veterans Affairs Manuals and so on and so forth. Of course this was 1991/1992 I was living in a tiny studio apartment in a particularly bad neighborhood, working in a sheltered workshop making a nickel per envelope I stuffed throw in PTSD and you will see that it was a difficult task for me to get somewhere where they had copies of these, let alone that they would let me look at. And there was so much knowledge around me, it was like the gold rush in those days, I could just sit on a bench a veteran would sit down next to me a little conversation later I had another nugget, I made copious notes. Phone numbers to call, ask for this guy or that guy he'll give you the straight scoop and they'd slip me a piece of paper with a number on it. You want to read this regulation or that one and another slip of paper into my hand. 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So taking my lesson from the squirrels earlier I started to gather, gather, gather…and learn HTML and work as a marketing systems analyst and work my claim. 1996/1997 major PTSD cork blows and unemployed. Working my claim, working the website. 20 Jan 1997 register HadIt.com domain name right after getting off the phone with the VA and saying I've had it with this. As fate would have it the old DAV board goes down just as mine opens up and folks start to wander in. So HadIt.com has two main components the website which supports the discussion board with links, articles, research resources etc. The website starts to grow, I can't tell you how many times I had to switch servers for space and features. I continue on a downward trend and in 1998 ended up back home in St Louis living in my sisters basement in therapy and working it, I swear I would have swung a dead chicken around my head at midnight naked if I thought it would have helped. The website continued to do great during this time, I just stayed in the basement bought new software, new books, and learned how to make things work and I continued to use this knowledge to make HadIt.com better. My 100% finally came through from the VA and I had a friend who is an advocate who helped me thru my SSDI claim, he was literally at my side thru the entire process and that came through for me. My therapist and sister continued to try and get me to leave the basement, but to no avail. At some point in 1998 or 1999 I put a counter on the website and was shocked to discover how many visitors we were getting. Time goes by my sister gets married and I move from the basement to the upstairs, there is much celebration that Aunt T is living in the light again. More time goes by and I settle into my life in St Louis and spend more time on the site trying new things, finding more information. 2003 I buy my own home VA loan. For years now I have just considered HadIt.com my job and I get up every morning go to the office and work for several hours, take an afternoon break and see where the rest of day takes me. I have a place in the office to use the computer and a comfortable to place to read journals and articles and take notes. Blah, blah, blah so that is my story and HadIt.com's intertwined.
    • HadIt.com Pass It On Cards

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    • VA Training and Fast Letter Forum Index

      VA Training and Fast Letter Forum Index The following is the index with links to the various Training and Fast Letters plus a few miscellaneous. These letters are not necessarily in the original formatting. I have tried to present them in an easy-to-read form instead of some forms as originally presented. Some of the paragraphs were WAAAAYYY too long. lol - HadIt.com Member fanaticbooks Something to be aware.... Some of these letters may be rescinded, outdated, or otherwise no longer viable. I have still included them because sometimes they provide additional insight or just plain more information than the newest version. Use them wisely. The oldest letters will display at the bottom with the latest letters displayed at the top, all in sequential numbers. Coding of the letters... FL = Fast Letter TL = Training Letter First two numbers = last two digits of year of origin Training Letter http://www.hadit.com/forums/index.php?/topic/40694-va-tl-00-07/ http://www.hadit.com/forums/index.php?/topic/40693-va-tl-00-06/ Fast Letter Number Title http://www.hadit.com/forums/index.php?/topic/44262-va-fl-11-15/ http://www.hadit.com/forums/index.php?/topic/44260-va-fl-11-13/ http://www.hadit.com/forums/index.php?/topic/44261-va-fl-11-11/ http://www.hadit.com/forums/index.php?/topic/44310-va-fl-11-09/ http://www.hadit.com/forums/index.php?/topic/42151-va-fl-11-03/ http://www.hadit.com/forums/index.php?/topic/40957-va-fl-10-49/ http://www.hadit.com/forums/index.php?/topic/40958-va-fl-10-46/ http://www.hadit.com/forums/index.php?/topic/40959-va-fl-10-45/ http://www.hadit.com/forums/index.php?/topic/40960-va-fl-10-42/ http://www.hadit.com/forums/index.php?/topic/40961-va-fl-10-39/ http://www.hadit.com/forums/index.php?/topic/40962-va-fl-10-35/ 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Anyone Been Diagnoses With Ms?

26 posts in this topic

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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..

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Posted · Report post

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.

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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

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

very thankful to chat..

thanx..

:smile:

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

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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..

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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.

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Posted · Report post

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

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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?

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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.yahoo.com/group/MSVETS/

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Thanx, I wil look into it :smile:

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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:

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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

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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

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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.

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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.

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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..

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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-sclerosis.org/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..

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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..

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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..

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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!

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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!

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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!

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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!

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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!!!!

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