In Sickness and in Health

[Nor-Cal Villan]

On 19/03/2024 at 04:54, bielesibub said:

Apologies for chiming in. I was interested to read your previous posts, you mentioned you were worried about MS. You've no doubt googled MS. MS is a many and varied disease, I know full too well. Seems no one person has the same symptoms or has the same path through the illness. I'm now 11 years from being diagnosed, it took the clowns down at Southampton General 2 years to get me diagnosed, another year of cocking about before they put me on any disease modifying meds - the sooner you get put on meds the better it seems. I know a load of people who lead a pretty happy normal life thanks to early diagnosis and DMTs.

My consultant said way back when, MS is usually the last thing they think someone might have because its symptoms masquerade as so many other things.

Did they give you a CT scan or an MRI? If its a CT then they chances are they are looking for something other than MS because a CT doesn't have the accuracy that an MRI does. What pain killers do they have you on, are they neuropathic pain killers?

BTW, I've not heard anyone else have a loss of taste with MS, have you had COVID recently? Good news about the weight loss.

Just now seeing this, as I am new here. My wife has MS. Diagnosed in 1998, has mostly done well ever since with the exception of a couple of exacerbations during times of high stress. We were told we would have to move somewhere with a cooler climate but we’re still here. It gets brutally hot here but common sense and done routine altering has more than worked for her. I hope you are doing well and have it in control. In our situation the drugs have been a miracle 

[Jonesy7211]

40 minutes ago, Xela said:

How you getting on @Seat68?

I've had a terrible week... WFH all week as my stomach was playing up. Then yesterday I just started aching all over and feeling worn out. Worst thing is, and i've never had this before, but both my wrists are in agony. Feels like the ligaments/tendons are on fire. I'm maxing out on Nurofen and its barely touching it. My right hand is next to useless. I can't form a first or exert any pressure with it. Its a good job i'm a left handed wiper! I'm hoping it disappears as quickly as it came but its ruined my weekend so far. 

Sorry to butt in, but call your ibd team and tell them your symptoms. Sounds like a flare up. You'll probably need to do bloods and a fecal calprotectin test to check your CRP. Might be time for the corticosteroids. If it is flare related, the sooner you get on them the better, the symptoms will go quicker.

[jim]

On 19/03/2024 at 14:09, Seat68 said:

That med might be for my coughing. Due to numb face/mouth I am also coughing a lot. He may think that might help. Not sure as I do not have acid reflux at all. 

Bit late so you may have had the answer but Naproxen can damage the lining of the stomach so they prescribe Omeprazole to counter act it. If you are still on it ask to be prescribed Vimovo this is Naproxen and Omeprazole combined with a modified release.

Edited May 18 by jim

[Seat68]

6 hours ago, jim said:

Bit late so you may have had the answer but Naproxen can damage the lining of the stomach so they prescribe Omeprazole to counter act it. If you are still on it ask to be prescribed Vimovo this is Naproxen and Omeprazole combined with a modified release.

My current painkiller is cocodemol but apparently the neurologist is prescribing me something else. I don’t want totale anything long term as they all have their issues. Cocodemol, ibuprofen, gloves and running my hands under hot water. Thats my regime at the moment. 

[bielesibub]

18 hours ago, Nor-Cal Villan said:

Just now seeing this, as I am new here. My wife has MS. Diagnosed in 1998, has mostly done well ever since with the exception of a couple of exacerbations during times of high stress. We were told we would have to move somewhere with a cooler climate but we’re still here. It gets brutally hot here but common sense and done routine altering has more than worked for her. I hope you are doing well and have it in control. In our situation the drugs have been a miracle 

MS is hideous, it is so unpredictable. I've got a few friends who are doing really well, I've also got very many who are not doing so well. The ones doing well, all seem to be able to keep infection free, not so much stress free though (one is going through a really tricky divorce).
As for myself I have my bad days, I have my worse days. I've had non stop kidney / urinary infections for the past 5 - 6 years, most of the time ending up in hospital.
You mention the heat, thats a killer for me. I assume you have air conditioning in your home? reason I ask, i went to the cinema last year to see Oppenheimer, it was really cold in the cinema, I went into the cinema being pushed in a wheelchair, I WALKED!? out of the cinema pushing the wheelchair - much to the bemusement of the cinema staff.
Are there support groups near by? I've made a load of good friends from them.

Edited May 19 by bielesibub
fixed a smelling pistake

[Xann]

Dry herb vapes such as the Arizer Air Max don't smell at all, unless it's exhaled straight into someone's face.

Just the thing for an MS flare when you don't want to stink out your house and neighbourhood.

[bielesibub]

57 minutes ago, Xann said:

Dry herb vapes such as the Arizer Air Max don't smell at all, unless it's exhaled straight into someone's face.

Just the thing for an MS flare when you don't want to stink out your house and neighbourhood.

Top tip. 

[Nor-Cal Villan]

7 hours ago, bielesibub said:

MS is hideous, it is so unpredictable. I've got a few friends who are doing really well, I've also got very many who are not doing so well. The ones doing well, all seem to be able to keep infection free, not so much stress free though (one is going through a really tricky divorce).
As for myself I have my bad days, I have my worse days. I've had non stop kidney / urinary infections for the past 5 - 6 years, most of the time ending up in hospital.
You mention the heat, thats a killer for me. I assume you have air conditioning in your home? reason I ask, i went to the cinema last year to see Oppenheimer, it was really cold in the cinema, I went into the cinema being pushed in a wheelchair, I WALKED!? out of the cinema pushing the wheelchair - much to the bemusement of the cinema staff.
Are there support groups near by? I've made a load of good friends from them.

Sorry to hear all that. Are the kidney issues MS-related? Yes, we have central A/C in our home. Where we in California, Chico, A/C is pretty much mandatory. My wife’s tolerance of the heat has been both mysterious & miraculous, as we were fairly certain we would have to move. Yes, there are support groups, but she’s done so well since the diagnosis in 98 that we never really needed to access them. I probably should have used a group when we first got the diagnosis but otherwise it’s been a relatively smooth road. She had the exacerbations I mentioned, and there have of course been many adjustments to daily life/routine, but overall she’s been very lucky

Gotta check out of a hotel at the moment but can pick this back up later 

[Seat68]

Had another MRI today. They injected something into me, contrast dye apparently. 

[tinker]

55 minutes ago, Seat68 said:

Had another MRI today. They injected something into me, contrast dye apparently. 

Been there, done that, Felt like I was pissing myself, very strange. I believe  its to help contrast your organs so they can get more detail, sure it will be ok  

Edited May 20 by tinker

[il_serpente]

On 20/05/2024 at 11:05, tinker said:

Been there, done that, Felt like I was pissing myself, very strange. I believe  its to help contrast your organs so they can get more detail, sure it will be ok  

Yes, contrast generally allows better visualization of blood vessels and the perfusion in organs.   I had a CT with contrast a few months ago and the feeling of pissing yourself is a weird one.

Another fun one:   I went to the urologist yesterday for what I thought was just an introductory consult after my primary care doctor had referred me after a lab test  showed a microscopic amount of blood in my urine.  He says the standard workup they do for blood in the urine to rule out bladder cancer is a CT (already had it) and a cystoscopy.   Are you ok with doing the cystoscopy now?   I was definitly not prepared to have an endoscope stuck up there but knew I'd probably procrastinate if I had to make an appointment to come back.   So, I expected a 10 minute chat and instead got a nurse smearing lidocaine gel on my todger and doctor jamming an instrument up into my bladder.  They inject water while inserting, so you do effectively piss yourself.   Fun times.

TMI, I know.

[tinker]

6 hours ago, il_serpente said:

Yes, contrast generally allows better visualization of blood vessels and the perfusion in organs.   I had a CT with contrast a few months ago and the feeling of pissing yourself is a weird one.

Another fun one:   I went to the urologist yesterday for what I thought was just an introductory consult after my primary care doctor had referred me after a lab test  showed a microscopic amount of blood in my urine.  He says the standard workup they do for blood in the urine to rule out bladder cancer is a CT (already had it) and a cystoscopy.   Are you ok with doing the cystoscopy now?   I was definitly not prepared to have an endoscope stuck up there but knew I'd probably procrastinate if I had to make an appointment to come back.   So, I expected a 10 minute chat and instead got a nurse smearing lidocaine gel on my todger and doctor jamming an instrument up into my bladder.  They inject water while inserting, so you do effectively piss yourself.   Fun times.

TMI, I know.

It ain't TMI, we need open discussions on this type of thing and villatalk offers a unique platform for it, strange as that may seem.

Good luck , I'm sure you won't need it.

One thing I have come to appreciate is the NHS and its staff who continue to fight for our health care despite the government and big businesses trying to monetize it all. We need a change in attitude towards it,  a vital service and once its gone.....well look at all the mess the private sector has made of everything they have got involved in, water, power, trains. Devastating tbh. Its time the public pushed back in support of the NHS.