Anyone Been Diagnoses With Ms?

[retiredat44]

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..

[retiredat44]

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..

[WAC-Vet75]

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!

[retiredat44]

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!

[WAC-Vet75]

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!

[retiredat44]

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!

[WAC-Vet75]

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!!!!