MS symptoms and treatment

[leo]

My wife has had symptoms of MS for the past 7 years. About 2 months back they got more aggresive and consistent. She is undergoing a high treatment of steroids over the next 3 days, hopefully it will eleviate the symptoms until she can get a proper diagnosis by a Neurologist as they still haven't determined what is causing her health to deteriorate. Any members or family of members dealing with MS or similar chronic diseases? Meanwhile she's booked off on medical leave for at least 3 months.

[omega50]

Wishing the best for her. My sis in Winnipeg diagnosed in 1980,She was in her mid 20's when she found out she had MS same day as she discovered she was pregnant with her first child,

She is quite personable and you can pm me if you want her phone contact for your wife if she needs to talk it out.

I am sure there are many more treatment options available to your wife, I am just not sure what they are.

[260 Rem]

My younger brother was diagnosed with MS in his early 20’s ... the remitting/relapsing type. Typically different symptoms during each flare which seemed to roll around every 3-4 years.
If it was impaired vision in the left eye, it would come back about 70%, so things just got progressively worse. He worked to age 50 then went on LTD. His kids bailed early and his wife later so he has been alone (except for me) for the past 12 years. He went into a nursing home 8 years ago and I spend time with him two days a week. He is now totally incapacitated at 65 years of age.
I also have a daughter-in-law age 45 recently diagnosed. They have her on one of the “new” drugs and she is doing OK, but not working.

[ditch donkey]

My wifes Doctor was convinced she had MS. She was diagnosed with Lyme disease. Lyme is often misdiagnosed as MS, schizophrenia, and dementia. Something to think about.

[Opalsasquatch]

Originally Posted by ditch donkey

My wifes Doctor was convinced she had MS. She was diagnosed with Lyme disease. Lyme is often misdiagnosed as MS, schizophrenia, and dementia. Something to think about.

I was going to mention this, you beat me to it.

Edit to add:
I heard an interview on the radio a couple years back... apparently Alberta’s Lymes test isn’t the greatest

It may be worth sending a test south of the border. The ‘expert’ on the interview said it is commonly misdiagnosed as MS as Alberta’s health care system hasn’t caught up to the reality of this disease.

[baticus]

I know of two people that have been misdiagnosed with ms, that really had lymes disease this year alone. Both had testing done for lymes here in Alberta and came back negative.

They both found a clinic in Calgary that sends the samples to I believe germany. Both samples came back positive for lymes and they are on the slow path to recovery.

Definitely something to consider.

[.270fan]

Originally Posted by leo

My wife has had symptoms of MS for the past 7 years. About 2 months back they got more aggresive and consistent. She is undergoing a high treatment of steroids over the next 3 days, hopefully it will eleviate the symptoms until she can get a proper diagnosis by a Neurologist as they still haven't determined what is causing her health to deteriorate. Any members or family of members dealing with MS or similar chronic diseases? Meanwhile she's booked off on medical leave for at least 3 months.

Has she had a brain MRI yet ? If not she should be asking for one asap. I'm currently fighting brain cancer and you'd be surprised how often we as patients have to ask for what you'd think would be routine tests.

[ceedub]

My wife was diagnosed 12 years ago. New drugs have really slowed down the progress of the disease, but they are very expensive unless you have great plans. Back then, they actually tested her for Lymes prior to determining it was MS.

She has issues with her vision from time to time, and fatigue. We've learned to live with it but it's not always easy.

Craig

Sent from my SM-A505W using Tapatalk

[leo]

I think Lyme Disease can be ruled out. MRI a week ago shows the lesion on her brain has doubled in size and another developed on her spine. Also showing deterioration of Myelin on her nerve endings. The hardest part is getting a Dr. To make a diagnosis so we can get her on the right meds. Thanks for the replies.

[270person]

Very sorry to hear this Leo. These types of things should not happen to good people. I sincerely hope there will be some good news in the future for both of you.

[nimrod]

Originally Posted by 270person

Very sorry to hear this Leo. These types of things should not happen to good people. I sincerely hope there will be some good news in the future for both of you.

X2,

[RavYak]

Originally Posted by leo

I think Lyme Disease can be ruled out. MRI a week ago shows the lesion on her brain has doubled in size and another developed on her spine. Also showing deterioration of Myelin on her nerve endings. The hardest part is getting a Dr. To make a diagnosis so we can get her on the right meds. Thanks for the replies.

Has she had a spinal tap done? From what I have read symptoms, mri showing lesions and spinal tap are the three primary ways to confirm a diagnosis. If she has had all them done and they still aren’t sure maybe should be looking for a second opinion. If you are pretty sure it’s MS and already have mri results might be worthwhile to book an appointment with an expert somewhere(states probably) to review and give their thoughts. Cost a bit of money but our health system seems half incompetent at this stuff.

I have been fighting some sort of issue the past 8 months now. Some of the symptoms have me leaning towards something like Lyme, MS or possibly nutrient deficiency due to digestion problems. Trying to get a diagnosis out of doctors these days is almost more painful then these debilitating diseases... So far seeing two general doctors and a neurologist, supposedly scheduled for an ENT and allergist... Doctors don’t want to do any of the tests, always worried about false positives and having to follow protocol to strike out easier things first... They keep wasting my time trying to prove that I am healthy rather then believing my symptoms and trying to diagnose the problem. One of the doctors recently said I have been dealing with these issues my whole life, I had to explain that I disagree and that I just went 6+ years without seeing a doctor, I am not visiting him every couple weeks for fun... Giving the doctors one more chance these next couple weeks then going to see a Naturopath to get the tests done doctors are hesitant to do... Will have to pay for tests I shouldn’t have to but if that is the only way to get healthcare I guess it is what I have to do.

Hope your wife gets this stuff figured out, it is definitely no fun.

[amosfella]

One might want to look at information on MS/lymes disease and the carnivore diet.

[Gear guy]

Sure is a tough thing to have. Lots suffer from it and I don't wish it on anyone. Best wishes for you and your wife

[Spidey]

Originally Posted by leo

I think Lyme Disease can be ruled out. MRI a week ago shows the lesion on her brain has doubled in size and another developed on her spine. Also showing deterioration of Myelin on her nerve endings. The hardest part is getting a Dr. To make a diagnosis so we can get her on the right meds. Thanks for the replies.

It might be a good thing that she hasn't been formally diagnosed yet. A good friend of mine was diagnosed a few years ago and, because of the new diagnosis, he was able to get on a clinical trial for Ocrelizumab (trade name Ocrevus). His symptoms have improved significantly, and because he was part of the clinical trial he is covered for life and doesn't have to pay the tens of thousands of dollars per year that this drug will end up costing. If that trial has ended (it was still active as of last July), it might be worth looking into other clinical trials, especially if your drug plan doesn't end up covering one of the other meds.

[tobin]

If your going through the family doctor route, dont. Go to the ER. Pick a night when symptoms are bad, head down there. It might take 12-15 hours to get through. But she will have a cat scan that night and a requisition for an MRI or a referral for an MRI. MRI is the only way for MS diagnosis and will rule out or in lyme disease. She should immediately cut down or quit smoking as well as alcohol. Start eating, cut out aspartame, transfats. Start taking huge doses of cod liver oil, the brain needs omega 3's from fish. Vitamin d deficiency is common in MS. Start regulating body temp. It's easier to to stay warm than cool. MS used to be diagnosed by placing the patient in a hot tub of water. Get to the er, be cautious of disease modifying drugs, particularly copaxone, which has side effects similar to the disease. Good luck. If er gives her a cat scan, thsts enough to get in with the ms clinic. Do not make drug treatment plan with a neurologist that's not part of the ms clinic. The ER route will speed up the diagnosis part, by 1 to 2 years.

[sdb8440]

If your going through the family doctor route, dont. Go to the ER. Pick a night when symptoms are bad, head down there. It might take 12-15 hours to get through. But she will have a cat scan that night and a requisition for an MRI or a referral for an MRI. MRI is the only way for MS diagnosis and will rule out or in lyme disease.

THIS...I, Mom, two of the kids all came down with a bad cold last fall, nasty thing. Mom's family doctor said it was a sinus infection....3 times. Took the clown 4 months to schedule an xray for a 50 yr smoker. I called it and went to the ER and within 15 days she was receiving care for cancer. I believe like mechanics, good doctors are hard to find, seems the best and brightest work where they see the most problems...like mechanics.

[rosh]

Originally Posted by RavYak

Has she had a spinal tap done? From what I have read symptoms, mri showing lesions and spinal tap are the three primary ways to confirm a diagnosis. If she has had all them done and they still aren’t sure maybe should be looking for a second opinion. If you are pretty sure it’s MS and already have mri results might be worthwhile to book an appointment with an expert somewhere(states probably) to review and give their thoughts. Cost a bit of money but our health system seems half incompetent at this stuff.

I have been fighting some sort of issue the past 8 months now. Some of the symptoms have me leaning towards something like Lyme, MS or possibly nutrient deficiency due to digestion problems. Trying to get a diagnosis out of doctors these days is almost more painful then these debilitating diseases... So far seeing two general doctors and a neurologist, supposedly scheduled for an ENT and allergist... Doctors don’t want to do any of the tests, always worried about false positives and having to follow protocol to strike out easier things first... They keep wasting my time trying to prove that I am healthy rather then believing my symptoms and trying to diagnose the problem. One of the doctors recently said I have been dealing with these issues my whole life, I had to explain that I disagree and that I just went 6+ years without seeing a doctor, I am not visiting him every couple weeks for fun... Giving the doctors one more chance these next couple weeks then going to see a Naturopath to get the tests done doctors are hesitant to do... Will have to pay for tests I shouldn’t have to but if that is the only way to get healthcare I guess it is what I have to do.

Hope your wife gets this stuff figured out, it is definitely no fun.

All the best to all. Our system is messed up, my wife has been dealing with issues for 4 years now. She was tested for Lyme at beginning but came back negative, who knows though? Her symptoms just came out of nowhere, wasn’t little thing here or there. We keep plugging away trying to hopefully figure it out one day. Might be worth find a place to test that sends to another country. As for MS my mother in law has had it for almost 40yrs been in a wheelchair for 30ish. Hers gets little worse all the time, but she is positive and that helps. She never complains and does everything she can from camping to quad rides. We have some friends that have MS and you would never know, better meds and control now a days. And different levels. All the best to all

[tobin]

Originally Posted by RavYak

Has she had a spinal tap done?

That's not really a thing anymore. The MRI shows brain lesions. First scan in done and a second scan is done using a highlighting dye. The dye will reveal active demylenation (spelling) which is an active multiple sclerosis "attack"
for an official diagnissis of multiple sclerosis you must have multiple active high lighting lesions within a year.

[tobin]

Originally Posted by rosh

All the best to all. Our system is messed up, my wife has been dealing with issues for 4 years now. She was tested for Lyme at beginning but came back negative, who knows though? Her symptoms just came out of nowhere, wasn’t little thing here or there. We keep plugging away trying to hopefully figure it out one day. Might be worth find a place to test that sends to another country. As for MS my mother in law has had it for almost 40yrs been in a wheelchair for 30ish. Hers gets little worse all the time, but she is positive and that helps. She never complains and does everything she can from camping to quad rides. We have some friends that have MS and you would never know, better meds and control now a days. And different levels. All the best to all

MS is hereditary. Being female, being related to some with ms, living above the MS line 40th parallel I think it is, your wife is statistically at high likelyhood of MS. After 4 years, she should have had an MRI by now. My advice is the same to you as well, buck it up and get ti that er next time she flares up.

[rosh]

Thanks. She’s been to er many times in the beginning where it mostly came down to people saying nothing wrong with u. MS checks were done right of the bat with MRI.

[RavYak]

I finally was able to talk doctor into testing for Lyme disease. I am hoping it comes back positive... Even in the time of this thread some of my symptoms have progressed. Paresthesia of both trigeminal nerves is no fun. So hard to concentrate when it feels like your face is either numb, crawling or tingling... Neurologist next week. If Lyme is negative hopefully next step is Mri, ct didn’t show anything but would miss lots from what I understand.

Good luck on your battles. Nothing worse then feeling like you are barely functional and everyone is telling you that you are fine or it’s in your head...

[gpgriz]

Originally Posted by RavYak

I finally was able to talk doctor into testing for Lyme disease. I am hoping it comes back positive... Even in the time of this thread some of my symptoms have progressed. Paresthesia of both trigeminal nerves is no fun. So hard to concentrate when it feels like your face is either numb, crawling or tingling... Neurologist next week. If Lyme is negative hopefully next step is Mri, ct didn’t show anything but would miss lots from what I understand.

Good luck on your battles. Nothing worse then feeling like you are barely functional and everyone is telling you that you are fine or it’s in your head...

Ha! MS is in your head!
Good luck with the process...