Re: Please help

[Guest guest]

,

I'd say for sure you need to go to another neurologist.

If your husbands MRI showed lesions (spots) on his brain MRI, then that

itself is cause for further testing for MS....let alone (!!!) treatment for

heavens sake.

Is your husband receiving any kind of treatment for his symptoms? You can

ask a lot of people here...you may have to go to more than 1 doctor to get

help. It's sad to say...but it's so true.

I know how you feel about the insurance thing. I was inbetween working and

staying at home to raise my 2 small kids (my job carried the insurance,

hubby's doesn't)...so we didn't have any insurance when I fell sick, so

needless to say I didn't have any coverage until I just started medicare via

disability this past january.

keep your head up and you will be able to help your hubby.

what state do you live in? maybe someone here can help you in that

aspect....finding you a dr. I'm in Nebraska.

The symptoms you describe sound like MS, and with the lesions....I would

definitely keep trying to get him medical help.

God Bless,

Kim in Nebraska

Please help

> Hi,

> For the past year I have been watching my husband's health

> deteriorate. We are caught in a vicious cycle. I will try to

> explain breifly. He gets sick intermittently. His symptoms include,

> severe migraine, sensitivity to light, confusion, fatigue (one time

> he slept for 72 hrs except for when i woke him to check on him),

> sensation of pins and needles in his arms and hands, tremors,

> inability to control his legs, blurred vision and slightly slurred

> speach. he says his legs dont go numb just " won't mind him " . When

> his legs go he is either unable to walk with out support or he walks

> like he is drunk.

>

> Then he gets better, we go to work. We get insurance. We start

> trying to work our way through the hmo madness to get the referrals

> reinstated. if we are lucky we get to the neurologist. this last

> time we even got an mri which showed spots on his brain. Stupid

> neurologist called it migraines but gave us a list of other things it

> could be which included ms. said come back in a year. we can't do

> this for another year. everytime my husband gets sick he loses his

> job, then when it gets bad i lose mine because i end up taking off

> too much to take care of my hubby.

>

> We are both eligible for insurance again next month. but already he

> is getting weak. I am scared. any insight, advice or suggestions

> would be appreciated. i have felt for months at a very deep level

> that we are dealing with ms. getting a diagnosis, thats the

> maddening part.

>

> Thanks,

>

>

>

>

>

>

>

>

[Guest guest]

Hi

I would probably contact the National MS Society to see if they have any suggestions. You might find in your area a way to get your treatment you need.

http://www.nationalmssociety.org/

Bill

Please help

Hi,For the past year I have been watching my husband's health deteriorate. We are caught in a vicious cycle. I will try to explain breifly. He gets sick intermittently. His symptoms include, severe migraine, sensitivity to light, confusion, fatigue (one time he slept for 72 hrs except for when i woke him to check on him), sensation of pins and needles in his arms and hands, tremors, inability to control his legs, blurred vision and slightly slurred speach. he says his legs dont go numb just "won't mind him". When his legs go he is either unable to walk with out support or he walks like he is drunk. Then he gets better, we go to work. We get insurance. We start trying to work our way through the hmo madness to get the referrals reinstated. if we are lucky we get to the neurologist. this last time we even got an mri which showed spots on his brain. Stupid neurologist called it migraines but gave us a list of other things it could be which included ms. said come back in a year. we can't do this for another year. everytime my husband gets sick he loses his job, then when it gets bad i lose mine because i end up taking off too much to take care of my hubby.We are both eligible for insurance again next month. but already he is getting weak. I am scared. any insight, advice or suggestions would be appreciated. i have felt for months at a very deep level that we are dealing with ms. getting a diagnosis, thats the maddening part.Thanks,

[Guest guest]

Hi ,

I am not a doctor but I have had ms for over 20 yrs. The first thing that

you should do is to get the insurance.

If it is ms, there are a lot of things that you can do to help, go to

www.copingandprevailing.com If you cannot afford to pay for the book send

me your mailing address and I will send it to you. There is no reason why

your husband cannot have a happy, active and fulfilling life. Yes, ms is

sometimes a problem but there is a lot that can be done and done without

drugs.

If you treat ms just as you would any other problem that is all it will be.

You overcome those problems.......you will also overcome this problem. I

surely do not mean or intend to minimize the difficulties that ms can

present. At times they can be quite formidable but in spite of this they

still must be accepted, faced and overcome.......just as any other problem

Life goes on regardless of ms so you must find your way and you both will

find you way.

Regards,

Tom

Please help

> Hi,

> For the past year I have been watching my husband's health

> deteriorate. We are caught in a vicious cycle. I will try to

> explain breifly. He gets sick intermittently. His symptoms include,

> severe migraine, sensitivity to light, confusion, fatigue (one time

> he slept for 72 hrs except for when i woke him to check on him),

> sensation of pins and needles in his arms and hands, tremors,

> inability to control his legs, blurred vision and slightly slurred

> speach. he says his legs dont go numb just " won't mind him " . When

> his legs go he is either unable to walk with out support or he walks

> like he is drunk.

>

> Then he gets better, we go to work. We get insurance. We start

> trying to work our way through the hmo madness to get the referrals

> reinstated. if we are lucky we get to the neurologist. this last

> time we even got an mri which showed spots on his brain. Stupid

> neurologist called it migraines but gave us a list of other things it

> could be which included ms. said come back in a year. we can't do

> this for another year. everytime my husband gets sick he loses his

> job, then when it gets bad i lose mine because i end up taking off

> too much to take care of my hubby.

>

> We are both eligible for insurance again next month. but already he

> is getting weak. I am scared. any insight, advice or suggestions

> would be appreciated. i have felt for months at a very deep level

> that we are dealing with ms. getting a diagnosis, thats the

> maddening part.

>

> Thanks,

>

>

>

>

>

>

>

>

[Guest guest]

Hello ,

I know what you're going through - to some extent anyway. A radiologist, a

specialist, and several other health care professionals swear that I have

MS. I had a neurologist tell me I have MS, but when she wrote her official

report, she denied it!!! I had an extensive exam done by a

neuro/opthalmologist after that. She said I don't have MS, but she was sure

I had something worse - central nervous system vasculitis. I TAPED the

ENTIRE exam, yet she was crazy enough to deny everything she said when she

wrote her report, and claimed I only needed to see a shrink and I could go

back to work in no time - like I have no severe immune deficiency,

major/progressive skeletal problems, besides all the MS symptoms, etc.

etc.!!! My heart goes out to you and your husband!! Try to find a good

general practitioner, or a " physiatrist " (they are musculo/skeletal

specialsts) and get another opinion. INSIST on copies of the MRI films, all

doctor's clinic notes etc. from all the doctors he has already seen, and all

the ones you see in the future.

The next time he has a severe flareup - head to the ER. I hope you live in

a community where there is a hospital which will treat him at no charge, due

to the fact that it's an emergency. Others in this group may say the

opposite, but I would encourage you, both if you end up going to the ER and

if you end up trying to get a second opinion from a general practitioner, to

not say even ONE word about any prior doctor's opinions. That's what I

finally did with the neurologist who said I have MS " until proven otherwise "

(even though she backpedaled later). I handed her my MRI films, had her

examine me, and told her I wanted her to make up her own mind what was wrong

with me, instead of being unduely influenced by the opinions of others.

If you can get a doctor to say even " probable MS " , ON paper - apply

immediately for Social Security Disability!! But hold back something to do

with one or more of his symptoms, such as the severe migraines, and don't

mention that on your application, and perhaps try to get the doctor to not

mention it either. I say that because as usually happens, your husband will

be turned down on his first SSDI application. In order for them to

reconsider another application, he will have to have a new " illness " that in

and of itself is considered debilitating.

I still don't have a confirmed diagnosis of MS myself, even though the last

ALJ (SS judge) stated in his opinion that I have MS or probable MS (I can't

remember which now), so I can't really help you much in that regard - in

terms of doctors etc. to approach, but as Bill said, perhaps the National MS

Society can. I can perhaps though help you a little further on your quest

for SSDI, so feel free to contact me about such if you'd like. By the way,

at my first Social Security hearing the judge asked the so-called vocational

expert (who was their witness - not mine), how many days a person could miss

from work and still be considered a viable employee. I don't remember how

many days she said, but I could look it up if you'd like. At any rate, by

going for physical therapy one day a week, and doctor's appointments every

week, I far, far exceeded the limit she set. It appears your husband does

too.

Oh, and I just thought of another avenue you could try. When my skeletal

problems became so horrendous in 1999, I started working with the state

office of " rehabilitation services " . They were so very, very helpful

!! They paid for my doctor's appointments, several MRIs, etc. etc. -

because it didn't take them long to realize that I could not work anymore,

at anything, and so it better served them to help me get on SSDI. They

couldn't legally close my case until I was on SSDI, and so they were

obligated to pay for my medical care. Hopefully your state will allow for

the same. That will be a huge relief to you and your husband. Also, since

you are able to work only limitedly, SS may not have to consider you as

gainfully employed either, which will help your husband's application.

Grace and peace to you both!!

Rita, in Utah

Please help

Hi,

For the past year I have been watching my husband's health deteriorate. We

are caught in a vicious cycle. I will try to explain breifly. He gets

sick intermittently. His symptoms include, severe migraine, sensitivity to

light, confusion, fatigue (one time he slept for 72 hrs except for when i

woke him to check on him), sensation of pins and needles in his arms and

hands, tremors, inability to control his legs, blurred vision and slightly

slurred speach. he says his legs dont go numb just " won't mind him " . When

his legs go he is either unable to walk with out support or he walks like he

is drunk.

Then he gets better, we go to work. We get insurance. We start trying to

work our way through the hmo madness to get the referrals reinstated. if we

are lucky we get to the neurologist. this last time we even got an mri

which showed spots on his brain. Stupid neurologist called it migraines but

gave us a list of other things it could be which included ms. said come

back in a year. we can't do this for another year. everytime my husband

gets sick he loses his job, then when it gets bad i lose mine because i end

up taking off too much to take care of my hubby.

We are both eligible for insurance again next month. but already he is

getting weak. I am scared. any insight, advice or suggestions would be

appreciated. i have felt for months at a very deep level that we are

dealing with ms. getting a diagnosis, thats the maddening part.

Thanks,