Multiple sclerosis

[Diaperman95]

Has anyone her have MS or know a lot about it and early symptoms. For the last 12 to 15 years my body has just went down hill. To much to even post to be honest. I am having lots of memory issues now too. Hand tremors and numbness in places there should not be and so on, with Idiopathic gastroparesis too, and it just about destroyed me to the point I did not want to even wake up in the morning. I did get a gastric pacemaker and it helps a lot. I always had bladder IC but this bowel IC is all pretty new. The last 5 years has been massive. My wife has noticed a huge decline in my cognitive abilities.

I broke down in tears last week at my pain management doctors office. I just kept telling him everything going on and discussed symptoms with him that I had not in the past as it did not pertain to the chronic pain I am seeing him for. He told me it sounded a lot like MS but I was set to see the right people so hopefully they will figure it out. He No joke is pushing 80 and sharp as tac. He was a very respected surgeon for 50 years. I know he cant tell by just my symptoms but it sure got me reading and comparing. The more I read the more it describes me. I seen a neuro the other day but he was more worried about me having carpel tunnel. I had seen him before 5 or 6 years ago and he diagnosed pernicious anemia. It causes low B12 and can cause very similar issues. They got myB12 right and I take monthly injections since then. He drawn blood and is going to make sure my B12 is still good. But something is causing it and I take my shots and all meds as told. I am set to go back to a rheumatologist in oct.

I am in a great depression about all of this and just want the damn merry go round to stop so I can get off!
Maybe is MS & Maybe it is not MS. I just want to a diagnosis so they can target the real issue and may slow it down before it gets to the point I cant take care of myself!!
Send Me a PM if this fits you and you feel like sharing, Thank you for let

 

[Pino]

Has anyone her have MS or know a lot about it and early symptoms.

Hi, i have got ME and not MS, but MS was never actually tested. ME and MS have got 80% similar symptoms, the main difference is spastic, but not everybody with MS has got them or ever gets them. MS is called the "illness of 1000 faces" in German, and this is for a reason.

I am still looking for a doctor who wants to test me.

For about 10% of people with MS, bladderproblems are the first symptom. You already have got many commodities of MS, so i think there is enough reason to get tested for this.

MS is no death sentence and only 5-10% loose the ability to walk, and, that is another main difference to ME, there are therapies for MS.
It is Important to get the diagnosis as early as possible.

When you get tested, nothing will change for you, you already are dealing with all the problems at all, the diagnosis will just open up treatment options. So do not worry about this.

 

[BobbiSueEllen]

American docs are horrible on ruling MS in/out because of how the current system favors those with excellent insurance. Our system here has rotted because of political wrangling/pandering and Big Pharma's overwhelming monetary swagger from excessice prices & kickbacks. In America's overpriced medical institution, the motto is "money talks". Quite hypocritical in the face of the Hippocratic oath.

That said, you might have to get it ruled in/out outside the USA. In 2007, after 4 years in painful limbo, a Canadian friend hooked me up with their doc, who examined me and set me up for tests, especially the gold-standard MRI to scan your brain & spinal cord for lesions (white patches on an MRI). Everything there was much more affordable...and the docs there are both capable & willing.

In the end, my diagnosis was severe fibro, as fibro & MS are symptomatically identical; however, with fibro, there are no brain lesions...just loads of daily joint/muscle pain and susceptibility to heat fatigue. Unlike MS, there is no medical treatment regimen for fibro...only "manage your symptoms" and "good luck". That's it. Fibro's getting more recognition...finally...just not much more attention beyond that. It truly sucks.

Keep us posted...I'd love to keep reading up on your quest for an answer, even if that's all you get. Please...keep talkin'!

 

[NappiedTruckDriver]

I feel for you lot and you’re inadequate health system
Don’t get me wrong our NHS isn’t 100% the best but it’s free no matter what money you've got , i you’ve got money you can go private , if not stay with the NHS 75 years and still going
we pay for it through out taxes called National insurance
I’ve had 3 gastro Camera appointments since last November I hate to think how much each one would cost in the USA
Hang in the Diaper man

 

[SuzakuAkatori]

My grandpa had MS for the last 30 or so years of his life and he had the degenerative kind meaning life expectancy after diagnosis was typically at most 15 years but he lived through 2 strokes and recovered with his executive functions intact each time. The thing that got him in the end was kidney failure from MS, he lost the ability to walk completely when I was 5 or 6. MS is an autoimmune disease where the immune system attacks the protective membrane on nerve tissue in the body resulting in nerve damage. Some older medecines for it also can cause anyone who is prone to balding to lose most of their hair within 5 or so years due to hormone changes. He eventually had a pacemaker installed for his heart and talking for him became more difficult over the years signifying the later stages of the illness such as declining organ function. However he lived with it for over 30+ years passing away on February 7th 2020 from kidney failure related to MS. He was the most stubborn tough person I ever knew, it was suspected he got MS from his aggressive smoking habit that took him getting a heart attack at around age 30 to kick the habit.

 

[Diaperman95]

Hi, i have got ME and not MS, but MS was never actually tested. ME and MS have got 80% similar symptoms, the main difference is spastic, but not everybody with MS has got them or ever gets them. MS is called the "illness of 1000 faces" in German, and this is for a reason.

I am still looking for a doctor who wants to test me.

For about 10% of people with MS, bladderproblems are the first symptom. You already have got many commodities of MS, so i think there is enough reason to get tested for this.

MS is no death sentence and only 5-10% loose the ability to walk, and, that is another main difference to ME, there are therapies for MS.
It is Important to get the diagnosis as early as possible.

When you get tested, nothing will change for you, you already are dealing with all the problems at all, the diagnosis will just open up treatment options. So do not worry about this.

I will read about ME. I am not so much worried about dying from it but instead loosing who I am. I have always been sharp as a tac when it comes to math and engineering or anything mechanical and stuff and a great multi tasker. I use to be in charge of 50 drivers in a multi million dollar company. I could tell you off the top of my head where everyone was and the stops they was making, as well as all the curve balls throughout the day that I had to deal with and change to get shit done. Now I cant keep up with my keys or phone! My mind slipping is my biggest thing that scares me the most. ( I just had to ask my wife how to spell dying. I mean I know I never was the best at spelling but that shit happens daily.) That and them not figuring this shit out in general, my muscles and joints are just getting worse daily as well. I have always been a hands on make it happen independent guy. This is what scares me!!! I have another reason that scares me more I might message you on that one day as it is not something I want to share with everyone.

The spastic shit is something I am seeing. I have very limited mobility in my ankles, hips, shoulder and hands. Those joints and even my elbows every now and again will lock up when at rest more than a hour or two. I wake up in pain every night and have to work one or more of those joints back and forth slowly to get it to un lock. It is not just a stiffness it is very painful when it happens. This with other symptoms is one of the things that made my pain management doctor say it could be MS.

I realize things won't get much better even when I get diagnosed with what ever it is. MS or anything else most likely as the Damage is done. I just want to get some treatment to slow things. I have my first grand baby on the way.

I can not have a MRI as long as I have this gastric pace maker. So that scares me too. When I developed Gastroparesis I was so damn sick with my stomach all the time I put everything else on the back burner just trying to survive all of those flare ups. I did not care if I could have a MRI at the time, I just wanted the vomiting to stop. Now I have that some what under control I am trying to figure some of this other stuff out. I know a spinal tap is another way to tell it is just getting them to do that without the MRI pointing that away. I have also have been reading that Gastroparesis is a symptom that many people with MS get. Most the time it is when the disease more advanced but not always the case. Sometimes it presents early..

I understand why they say it is the face of 1000. MS can affect so much because it breaks down the protective coating over the nerves and your nerves control everything. Including functions that are automatic like breathing and stomach mobility. Like one of these new cars 20 years from now when the wire harnesses start to get brittle, everything on these cars are going to short out.

I am trying not to stress to bad and I did have low B12 before and that also will do a lot of the exact same things but I am on B12 injections and have been 5 years now. My stomach stopped making the enzyme needed to absorb it.
He did draw blood to check it so maybe it could still be low. I guess I will find out. I had no Idea how many people have MS because I always thought about the people in the electric wheelchairs with a breathing tube for the most part. So I was happy to read that only 10% get that bad off and dementia from it is real low too..

Then on the flip side of my thinking..... My mother died of Parkinson's and my fathers mom too. So it runs high in the family and can also cause a lot of issues. I am having hand tremors and I am always finding my self getting stuck on words when talking or forgetting what I am saying. That could be either of the two or low B12 because I did the same thing when it was low before.


I try to keep a positive attitude all the time about life in general as well as my health. But it gets so damn OLD knowing my body and now mind is failing and cant do nothing about it. I am lined up to see about 4 specialist so maybe one of them will push for the right test. I know you understand what it is like to want answers. I just do not understand why they cant find them with so many issues and many serious. I mean I have been on SSD almost 5 years now and it took me 5 years to get on it. I was having symptoms 5 years before that. Our medical system is just so screwed and people on medicare or medicaid DO NOT get treated as well as private insurance.

Keep fighting for the answers my friend. I plan on doing the same.

How well is the botox working out for the IC?

 

[Diaperman95]

American docs are horrible on ruling MS in/out because of how the current system favors those with excellent insurance. Our system here has rotted because of political wrangling/pandering and Big Pharma's overwhelming monetary swagger from excessice prices & kickbacks. In America's overpriced medical institution, the motto is "money talks". Quite hypocritical in the face of the Hippocratic oath.

That said, you might have to get it ruled in/out outside the USA. In 2007, after 4 years in painful limbo, a Canadian friend hooked me up with their doc, who examined me and set me up for tests, especially the gold-standard MRI to scan your brain & spinal cord for lesions (white patches on an MRI). Everything there was much more affordable...and the docs there are both capable & willing.

In the end, my diagnosis was severe fibro, as fibro & MS are symptomatically identical; however, with fibro, there are no brain lesions...just loads of daily joint/muscle pain and susceptibility to heat fatigue. Unlike MS, there is no medical treatment regimen for fibro...only "manage your symptoms" and "good luck". That's it. Fibro's getting more recognition...finally...just not much more attention beyond that. It truly sucks.

Keep us posted...I'd love to keep reading up on your quest for an answer, even if that's all you get. Please...keep talkin'!

So you had to go to Canada to get help. I was told 7 or 8 years ago it was just fibro and they throw that term around as a catch all in the US so damn bad. I have already read many stories of people having serious illness missed because they ruled it as fibro. I just have to much major stuff going that it does not cause like Gastroparesis and AV necrosis and many other chemical deficiencies in my body. I have no joke been in the hospital for 3 day stays or longer over 25 times in 3 years.

I am glad yours came back nothing super serious. Not that chronic pain is not serious and nerve pain does not respond to pain meds very well either. I am trying to get it figured out. My doctor thinks one of these specialist will figure something out this time that enough stuff changed. So we will see. I am still trying to get a new hip in the middle of all this too.

I had to buy meds from Canada once too. For my GP, The meds was $300 a month in the US with my insurance and $1600 without. They was $54 in Canada with no insurance.


Thanks for the reply.

 

[Diaperman95]

I feel for you lot and you’re inadequate health system
Don’t get me wrong our NHS isn’t 100% the best but it’s free no matter what money you've got , i you’ve got money you can go private , if not stay with the NHS 75 years and still going
we pay for it through out taxes called National insurance
I’ve had 3 gastro Camera appointments since last November I hate to think how much each one would cost in the USA
Hang in the Diaper man

Yeah our system is Fucked. Plain and simple. I am fortunate to have been able to get disability and medicare but our system in general is just messed up. Insurance companies get to dictate to the doctors what procedures can be done and what meds are allowed, not the other way around. Then hospitals and doctors know the insurance will never pay what they ask so they over bill. Not a little a lot! Then so they do not break contracts with insurance companies the hospitals over bill the people without insurance. The government needs to put a cap on what they can charge for each procedure.

Not joke I had surgery to put my gastric pace maker in me in Dec. It was $457,000 for the surgery and a 2 day stay that they billed my insurance. That is not including the doctor of anesthesia! My insurance paid $10,000 and said I owed $1500. Hand to God No exaggeration

I even screen shot it minus my name and info. Now you know damn good and well the hospital made money or they would not of done it. But if the hospitals do not charge the uninsured people the same high rate then the Insurance companies claim that they are being over charged even though they have contracts to use the hospitals and get huge savings like here,

They only paid 2.294% of the asking and told me to pay $1500.

The only good part about being disabled and on Social Security is they can not come after my money. It is protected the only thing that can get your money on SSD is if you owe back taxes or a student Loans. I try to pay my part but when you see as many doctors as me That adds up fast. Our entire system in this country is just screwed up!!

I am hanging in there and do not plan on giving up. You have a blessed day

 

[Diaperman95]

My grandpa had MS for the last 30 or so years of his life and he had the degenerative kind meaning life expectancy after diagnosis was typically at most 15 years but he lived through 2 strokes and recovered with his executive functions intact each time. The thing that got him in the end was kidney failure from MS, he lost the ability to walk completely when I was 5 or 6. MS is an autoimmune disease where the immune system attacks the protective membrane on nerve tissue in the body resulting in nerve damage. Some older medecines for it also can cause anyone who is prone to balding to lose most of their hair within 5 or so years due to hormone changes. He eventually had a pacemaker installed for his heart and talking for him became more difficult over the years signifying the later stages of the illness such as declining organ function. However he lived with it for over 30+ years passing away on February 7th 2020 from kidney failure related to MS. He was the most stubborn tough person I ever knew, it was suspected he got MS from his aggressive smoking habit that took him getting a heart attack at around age 30 to kick the habit.

Sorry to hear about your loss of grandpa. It seams like no one in my family died of natural causes. They all had some kind of autoimmune stuff going on. I do have a few autoimmune disorders that they know about but nothing major enough for this. But mot if the time if you have 1 or 2 autoimmune disorders then there are more.

 

[Pino]

Keep fighting for the answers my friend. I plan on doing the same.

How well is the botox working out for the IC?

Hi,

Brain Fog is something i have to deal with either, it was much worse, like you said, especially spelling and math, i had to ask me wife how to spell "houses" one time, it freaked me out. I could not do any math for some time, i was so slow. I could not remember names, i forgot the name of my best friend when i met him. It got better when i found out i had developed Sprue as a "side effect" of ME, when i went gluten free it got better in some weeks. Much better. Now the brain fog is back, but different, my short time memory is sometimes completely gone, you know the moment you go into the cellar and forgot what you want there? It happens to me seven times in a row sometimes.
That is related to my POTS. Do you have POTS symptoms by the way?

I get a new Botox injection next week, the pain i coming back, but it is still O.K. most of the time.
The fact i reduced Histamin intake may helped either, in the last six weeks i barely took any pain killers, for anything.
This is always a sign for a general "good" health, of course still having chronic illness.

 

[Diaperman95]

Hi,

Brain Fog is something i have to deal with either, it was much worse, like you said, especially spelling and math, i had to ask me wife how to spell "houses" one time, it freaked me out. I could not do any math for some time, i was so slow. I could not remember names, i forgot the name of my best friend when i met him. It got better when i found out i had developed Sprue as a "side effect" of ME, when i went gluten free it got better in some weeks. Much better. Now the brain fog is back, but different, my short time memory is sometimes completely gone, you know the moment you go into the cellar and forgot what you want there? It happens to me seven times in a row sometimes.
That is related to my POTS. Do you have POTS symptoms by the way?

I get a new Botox injection next week, the pain i coming back, but it is still O.K. most of the time.
The fact i reduced Histamin intake may helped either, in the last six weeks i barely took any pain killers, for anything.
This is always a sign for a general "good" health, of course still having chronic illness.

Yeah the brain fog really is the worse thing. In 2015 when my b12 tanked it was way worse than now. I would start to tell about something and then a sentence in just loose it. I would have to ask the person I am visiting with what I was saying. I am doing it some now but not like before. I am supposed to find out tomorrow if it was low.

I do have the symptoms of POTS. I do not remember getting a actual diagnosis of it. But my family doctor explained he thought I will have it for life because the Vegus Nerve that stopped my stomach is also responsible for sending the signal to your body and vessels to constrict when you stand up so your BP does not drop. So I take that as a yes! I get the rapid heat beat too. Most of the time I am careful to get up slow and give my body time to adjust. Some times I forget and other times it is no choice. Like say when my colon says it is time to go now! I almost collapsed in the hall a few months back trying to make it. I had a new MM diaper on, less than a hour old too.

Good deal those shots are helping. Anytime you can get off or reduce pain meds it is a good thing. I hate being dependent on pain meds... I take them as told but if I go without, I will withdraw and bad. That sucks bad. I have to take a extended release Morphine 2 times a day, that is even if I do not take my IR meds. All those meds effect cognitive thought and much more. Not to mention I do not like being associated with dope heads that abuse meds or hard core street drugs. My pain meds have zero euphoric effect on me! Bet every time I am in a ER and we are going down my med list, as soon as I say Morphine 85% of them have already judge me.

I take Vistaril sometimes and it does seam like it sets it off my IC some but mine is always set off no matter what anymore. I have learned to live with it. We did not have botox the 90's, So I had to live with. I am glad they have some treatments for it now. It ruled me in my 20's and early 30's, my life was IC. Now I have a mental block on it. It must be a bad flare for me to notice.... The bad thing is that I have had several infections that I mistaken for IC and they put me in the hospital many times! But once in put me in the ICU a week. I had UTI get to my blood stream and from there it got around my heart. (Pericarditis) It was the second closest to death I ever felt. It makes every thing hurt! Everywhere!
I really do hope these treatments help you more than just too stay dry. But of course I hope you can stay dry too.

ALSO....I finally got to go to a good hip doctor today and he wants to replace both hips before they collapse on me.. I am doing the left side in Nov.
I never even mentioned hip replacement either. I was just sent for a evaluation of my hips. As soon as he came in the door he said who your hips.... They do not look good he told me. He pointed out my necrosis had tripled in size on my left hip and my joint spacing was narrow. Then pointed out the tiny spot of necrosis they was not worried about! It had let part of the femoral head cave in above it. Now I have flat spot on it so it binds. So I am finally getting some help with these hips!!!!

 

[Pino]

ALSO....I finally got to go to a good hip doctor today and he wants to replace both hips before they collapse on me.. I am doing the left side in Nov.

Hui (German "woah" ), this is a huge OP. Good luck with that one.

Sounds very much like you have POTS either, so the memory loss is directly related, same for the brain fog. This is reversible, not like Alzheimers.
Did you check for blood volume? ADH (copeptin)? Testosterone? Salt in blood and potassium? If not, better do it. it is no big deal, but perhaps you are a candidate for Desmopressin either, this could help a lot with the POTS.

I never got any morphine, it is hard to get in Germany. I was on Diclofenac 250mg 3x a day for years to get out of bed, but the most pain went away when i did the gluten free diet. Since then i can handle my pain without medication most of the time, but the last two weeks were really good.
Same for the bladder and bowel, i think this is all related.

When you are at the clinic, ask for IVs, this may help you to increase the blood volume and reduce other symptoms.

 

[Diaperman95]

Hui (German "woah" ), this is a huge OP. Good luck with that one.

Sounds very much like you have POTS either, so the memory loss is directly related, same for the brain fog. This is reversible, not like Alzheimers.
Did you check for blood volume? ADH (copeptin)? Testosterone? Salt in blood and potassium? If not, better do it. it is no big deal, but perhaps you are a candidate for Desmopressin either, this could help a lot with the POTS.

I never got any morphine, it is hard to get in Germany. I was on Diclofenac 250mg 3x a day for years to get out of bed, but the most pain went away when i did the gluten free diet. Since then i can handle my pain without medication most of the time, but the last two weeks were really good.
Same for the bladder and bowel, i think this is all related.

When you are at the clinic, ask for IVs, this may help you to increase the blood volume and reduce other symptoms.

I have had a lot of blood work done but I will ask the doctor about it. I am just starting to see a neurologist again and have a visit with a Rheumatologist in Oct. I did have real low T a few years ago but have been on injections a few years now and have that under control. My total was 2 digit like 54 and my free was a 5. Last time they checked them I was almost 500 and 94. So normal now. I notice a lot of difference getting it back up too. For one thing I had lost almost all the hair on my arms and legs and now it has came back. Jut going by that I would say it was real low for ten years or so but it is hard to say. I had low B12 in the past but take monthly shots and they called me today and told me it was normal. My potassium is normal now but was up and down like a yo yo when my gastroparesis was so flared. But when you get that sicj and dehydrated a lot of things are off. I will ask about my AVP or look at my medical records, One cool thing is my doctor does use a health portal called My Chart that lets me look at every lab and test result plus more.

 

[Diaperman95]

Agree 100% with you BobbiSueEllen.
The health system in the U.S is decomposed.

Yes it is. The insurance companies have screwed it up bad. They should not be allowed to turn down a MRI. Even 20 years ago I had them do that. I had injured my shoulder and the doctor wanted a MRI and the said no go do PT. Then it got worse and they did one and all the PT torn it up worse and made it a bigger surgery when I did get it fixed.