MS like symptoms

[pumpkincake]

Has or does anyone have MS type symptoms with APS/Hughes????? If so...has there been anything or any treatment that has helped with those symptoms??? Desperately seeking answers!!!

[MaryF Administrator]

Hello, yes MS like symptoms are a common one, and this is why some people originally get diagnosed with this. However with the correct medication in some cases this calms down. Lots of people will post under me, with detailed info, of their own experiences...which you will find useful and also you will gain a few new perspectives. Mary X

[jetjetjet]

hi cake- i can say i dont have m.s. ,but every time i have problems with aps, because the symptoms are so similar , and white matter found in brain are consistent with both problems , its has come up alot----------------- jet

[paddyandlin]

Hi Pumpkin

Welcome to the group, yes as mary said MS symptoms are a very common issue and you will find fatigue, joint pain, as well as other things are common with a lot of people, one thing that seams to help with the symptoms is Hydroxychloroquine this seams to aliviate a lot of peoples issues.

The big problem with this condition is it is so unpredicatble that you are not sure if you will have no symptiomns to those that have ;lots to those that take meds and it helps to those that do not. The only clear message is blood thinners stop the clots which stoip a majority or the damage the other symptoms are a diffrent story and we all happy to tell you whats worked for us and some may help so please do ask us any querstions and we will be happy to help in any way we can

Paddy

[shelle]

yes... many MS symptoms and i have gone thru testing for it 3 times! i use a compounded topical pain/spasm cream that helps a bit .. valium helps with the muscle spasms .. i have had to start using a walker for balance and spastic issues ...i have vision problems that come and go w/o explanation ... not sure why but i am worse when it is very windy .. crazy disease ....

[taffydaffy]

I have been DX with Mild Cognitive Impairment and I also get very confused I was tested for Dementia as my nana and her sister had it at the same time it's scary I am aged 56 the Psychiatrist says I have some plaque in my brain but no shrinkage but the symptoms of M.S are sooo alike thought this would help you

Good Luck x

[siveinvan]

Hi! Mine tend to come and go. It's bizarre. Knees will buckle, joints hurt and then...gone...I found that glucosamine helps and some topical pain creams. Super strength anti-inflammatory medication...definitely seems linked to weather at times. The thing that has kept me calm is knowing (after years of this!) that in my case, it isn't consistent.

[margaretjo in reply to siveinvan]

Hi I was told that on no account must i use anti inflamatory drugs or creams while on blood thinning treatment. Just another incident of different stories from every doc you speak to. It is soooooo frustrating.

[siveinvan in reply to margaretjo]

That could very well be true; I am only on aspirin currently (was on heparin when i was pregnant). For me, I consider the quality of life over the millions of opinions; that said, if I were on a medication that specifically contraindicated Advil, I would stay away from it...

[Ohiorose in reply to margaretjo]

I was not taking Ibuprofen or naproxen because of things I'd read on these forums for folks with APS on warfarin, then when I asked my GP about it, he said "I never heard of that, you can take Ibuprofen if it helps your pain". I think it really raises my INR though, go figure. So I quit the ibuprofen for a while but I'm back on it now cause without it I'm so stiff and sore I can hardly move. We'll see what it does to my INR this time.

[Hidden]

I take plaquenil which seems to help. It doesn't start working right away but when I did for me I noticed a huge improvement. Not sure where I would be without it now. When I started to be able to get around more is when I realized just how much I had lost and was regaining, if that makes sense. I had been very limited in what I was able to do.

I still have some aches, pains and stiffness but not as bad as it was and not constant thankfully.

Balance, spatial and all that also comes and goes with no regularity. I have learned not to wear heels very much and to bring flat shoes if i do, just in case I turn into a wobbly thing!

[taffydaffy]

My G.P has stopped my NSAID'S as they can cause me to have another stroke I am missing them so much I have now bought Bach Rescue Remedy and to be honest it makes me so chilled and calm and the spray cost me under £ 4 over the years I have tried many things

[GinaD]

I'm so happy I found this board! So, I'm not alone! I have had these quasi arthritic hip and pelvic flares every year or 2 for the past 10 years. (Which is also the year I was diagnosed with Hughes. Coincidence?). I am convinced these flares are autoimmune, because the symptoms mimic whatever that particular specialist wants to see. Of course, my sumptoms are never entirely explained, and for reasons above my understanding, the docs are reluctant to run tests to r/ o other possibilities. I am ready to scream! In fact, I have screamed, though no one was here to hear except for my doggies. A sympathetic pharmacist introduced me and my doc to a compounded gabapentane/ketamine/clotiodine topical cream which does help. And PT helps ( I'm told my gait is atrocious.). But these flares still occur, often arriving literally with the wind, and I'd like to know if my present disability is the new normal. Meanwhile, I slowly progress through the sloth like American diagnostic process. Sigh. (and sometimes scream,)

[paddyandlin in reply to GinaD]

Welcome Gina,

We have alll and still are in the position of screaming and we all have this issue of feeling mad, we always happyto help just ask a question and will try to help

Paddy

[GinaD in reply to paddyandlin]

Thanks for the kind support Paddy. I used to treat my flares with careful self-adminsitration of Alleve. Last April my rheumy had a fit and said I must stop the Alleve as I may bleed out. He promised to give me "something else." I stopped the Alleve. But he didn't prescribe anything else. He just responded to my complaints of pain and disability by saying ". . . but your blood work looks fine.' I went from hiking/walking @ 100 miles a month to dragging myself through the grocery store. Finally, after 6 months of asking, he started me on salsalate and my sympathetic compounding pharmacist put me on the cream mentioned above. Then I started PT. I'm better, but I have a long way to go to get back on the trail.

[paddyandlin in reply to GinaD]

Gina,

Have you thought to be refered to St Thomas's or speak to your doc of putting you on blood thinners to see if there is a diffrenvce?

We all have this long road to go up please ask any questions and we will be more than happy to help with things we have tried.

Paddy

[whynotme]

MS diagnosis here yet have been told I have Hughes by a doctor in Poland. I would like to try Plaquenil but read that if you have eye problems they won't give it to you. They dx me with glaucoma as well but I wonder if it's due to the Hughes. Does anyone have any experience with similar? I have lately been fence sitting thinking that as far as treating Hughes with blood thinners they should be trying to find a med that would neutralize the production of the antibody and it's inflammatory process, not just prevent the clots. Frustrated that regardless of my plethora of symptoms they just find it easier to call it MS and leave it to burn itself out because that's the " throw their hands in the air" kind of way they deal with that one. Hope some brilliant minds are already working on that.

[paddyandlin in reply to whynotme]

Why,

thisw is the 64 million dollor question and i think they all working to this aim but we are at the infant stage still of identifying this illness but new things come every day.

Paddy

[Gadgets]

Hi Pumpkin

Plaquenil and warfarin took the edge off most of my problems but with APS you do get flare ups when the only thing to help reduce the pain and fatigue is to rest up. I work full time and can get away with perhaps 10 days hard work then bang in comes that horrid cold feeling of dread and fatigue, off to bed and rest up take it easy for a few days and away I go again. ~I know I am one of the lucky ones and I do really push myself to keep my motavation.

Good luck.

Keep smiling!!!

Gadgets

[clairegrinddal in reply to Gadgets]

good for you hun... keep on fighting....

[clairegrinddal]

yes ive got the same simtoms have to walck with a worlker.. lose my balance a lot.... dont if i can doo enything about it....and have alot off joint and musels pain.. life is a bith with this illnes.. hope you will fell better soon.. i dont.