texigurl 13/01/17
Last reply 1 year ago
NEW TO MS, Not to disease

Hello everyone. First I would like to thank whoever thought of this group because iin the two hours I have been reading posts and educating myself tonight I do feel a little better knowing Im not alone.

I was Dx’ed with RA in 2003. First they said Psoriatic arthritis and Fibromyalgia-the usual cocktail, but my blood work finally showed a positive RA FACTOR, and I was on Biologic meds from 2004-2006-when the eye doctor found a swollen optical nerve in my right eye. Biologic meds can propel the MS symptoms so I was taken off all biologics for a year. After that year they put me back on them and changed a few, but last year all RA big gun meds were stopped. In January of 2016 I tried to go off my steroids-I weaned properly, but couldn’t move a bone to get out of bed each day. A brain MRI (after a nasty fall) revealed White matter. My Rheumatologist said…..I think you have MS. She said it was common for autoimmune disease to coexist.

Other symptoms have included: A totally numb left arms three weeks duration October 2015.
Multiple falls, legs go out from under me.
Overheating rapidly with an urgent need to urinate-must happen to me 10 times a day, worse in summer.
Just to cook dinner I need a wet towel on the back of my neck. I drip in sweat
Blurred and double vision. Recently stopped driving on highways and bridges-or any narrow road. I dont
seem to be able to judge depth.
Vertigo-especially driving. Felt like the highway was moving. Had to pull over driving three times.
Finally just stopped doing it, now hubby does the driving.
Bad vertigo while sitting in one position, the room starts moving. Get very nautious
Severe headaches-I wake up with them. They debilitate me. My whole day is shot and Im in bed. Especially
behind my eyes and back of the head.
Numbness in my fingertips-I have it right now
Burning sensation under my knee-that drove me crazy, thought I was being bitten by a bed bug lol (I DO NOT
bed begs lol)
Feeling like something is touching my legs when there is nothing there.
UTI’s Last one was hematuria-bleeding. Very painful

I was attributing alot of this to the RA. No one in my family ever had MS on either side that I know of. Im very confused as to how I got here, but Im here nonetheless and I have to make the best of it. My Rheumatologist said the way to bea this disease was to keep moving, so I opened up a furniture painting business last March and its very successful so far, and I keep moving.

Today I had three MRI’s under anesthiesia (that Iron man mask freaked me out). Still a little groggy. Got results on two of the MRIs that NOW say multiple white matter LESIONS. That sounds like a progression to me since the last MRI just stated white matter but no lesions. Tomorrow I get to talk with my Neurologist. See what she thinks. I think based on my symptoms and research that I have RRMS. Im on long term low dose steroids for the RA so I think many of my symptoms could probably be worse or more frequent. Thankful they are not. If not be able to drive is the only limitation I will have from MS, I can deal with that. Dont wanna say Im really glad to be here, I dont think any of us are, but glad this group is here to help and that I found it.

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stumbler
1 year ago

Hi @texigurl and welcome.

You seem to have been through some struggles. Do you know there is one theory that MS may be caused by head trauma? Now, there’s a thought.

And yes, Rheumatoid Arthritis (RA) and Multiple Sclerosis do come from the same Auto-immune stable of conditions. It’s not unusual to pass through Fibromyalgia and RA en route to an ultimate diagnosis of MS.

You might want to have a read through of some of the MS Information Leaflets provided by the MS Trust, over here in the UK :-

https://support.mstrust.org.uk/shop

They can be quite useful in explaining some of our symptoms, and what treatments are available.

You might want to see if you can address some of your symptoms directly. An optometrist may be able to help with your eyes. Vertigo may be caused by benign paroxysmal positional vertigo (BPPV), which should be discounted. UTIs can be caused by Retention, so a Urologist/continence advisor may be able to help.

Like I say, you’re more than welcome here. 🙂


texigurl
1 year ago

Thank you very much Stumbler. I did have head trauma. Fell in my home 4 years ago and hit my head on my granite counter top. Slipped on one of those mesh door curtains I was trying to assemble. I was diagnosed with an AVM by my Neuro which is another reason for the MRI’s yesterday. I had two horrendous IMMEDIATE headaches that she thinks were brain bleeds from it. Apparently while I was asleep this morniing she called twice, so I am a little alarmed to say the least. Will know more when I speak to her. Thank you so much for the information and your response and welcome!


lettiemae
1 year ago

Hello,
I have psoriatic arthritis and MS. I am currently part of a clinical study as my neurologist believes there is a link between the anti TNF drugs I was on to treat my arthritis and the onset of my MS. Can I ask if you reacted worse to your MS diagnosis than your other health problems? When I had my diagnosis of arthritis I felt like a weight had been lifted as I finally had an explanation for the pain. However I just can’t seem to get my head around my MS diagnosis. I’m hoping that this group will be able to help me accept it and stop being to ashamed to tell people!


texigurl
1 year ago

Hi Lettiemae. My Rheumatologist (whom I adore and trust) says I have MS, my Neurologist hasnt diagnosed it yet.

My old Rheumy dx’ed me with Psa. I was finally relieved when I got the dx because many doctors told me it was all in my head. They wanted me to see the shrink, and I did, only for him to tell me “Elaine you know yourself better than they do”. Very kind man. Previous to that I was dx’ed with Lymes disease, and had a portable catheter placement for the IV antibiotics. Nothing helped. It wasnt until I moved to Pennsylvania that my symptoms of Psa got both worse and diagnosed. The old Rheumy I had ran bloodwork to find the HLA-B27 genetic marker. Then he pieced it together. All throughout that time my RA factor for Ruematoid was negative or should I say I was “Serum negative”.

I too believe as your doctor does, that the TNF inhibitors REALLY DO propel MS forward, and bring it on. I have been on all of these in this order: Enbrel, Methotrexate, Remicade (had to stop because of infection and had a very bad Anaphyllactic reation when they tried to put me back on) Humira & Methotrexate, Synponi. Then after a FOURTH medical opinion at NYU in NY city, it was suggested I go on Orencia in addition to taking oral antibiotics daily. I was on Orencia for almost two years. I always knew MS was a possibility but the option of not being able to lead a normal and fulfilling life over a quanitative life wasnt appealing to me. I am the mother of three grown children now and I have two precious grandaughters, but my youngest was still very small when I got sick. I was very sick through the whole pregnancy with her. UNFORTUNATELY, all three of my children are HLA-B27 positive, and all three suffer physically. Both my boys have been dx’ed with Ankylosing spondyllitis, my daughter is dx’ed with Psoriatic arthritis. We all do the best we can. My oldest-my son Paul 35 was on Humira for a while, and my daughter Megan 23 had an extremely bad reaction to Symponi. Subsequently, my son Paul is now having some of the MS symptoms I have. He hasnt been diagnosed, but alot of the classic ones like the vision disturbances he has.

As for acceptance, all I can tell you is that IT IS A PROCESS. There are very many days I still dont even fully accept the RA, until the symptoms smack me in the face again lol. Early on in the Psa diagnosis, I joined the National Psoriasis Foundation online here in America. I made alot of friends over the past 14 years that I have been a part of that, and they help me to remember my limitations, and help me cope on bad days. Im assuming it will be the same in this group. Its hard to be sick when your young and your mind is telling you one thing, while your body is saying something else. I was always a GO GO person. A nurse, owned my own business for 15 years, I was not used to being in bed, not used to not being able to clean, ride a bike, have outdoor recreation with my kids, etc. Slowing down, and modifying my lifestyle was both a process and took alot of time. I was sick since being pregnant with my daughter at age 32. Im 54 now, so as you can imagine alot of adjustment has been made, and I cant say that any of it was truly bad. In a strange way I needed slowing down. We sold our house in NJ where life is very hectic, and moved to the Mountains of Pennsylvania where life is very slow-Im very used to it now, but it took me a long time to adjust. Sadly I also watch my grown children struggle to adjust, and to me that is worse than me struggling. I would rather it be only me. In the beggining of this I even refused to take pain meds for two years. It wasnt until an online member of the NPF group suggested that I was “trying to fight a war with no soldiers”, that I finally gave in. I learned that pain itself is a separate condition that can take over and ruin your life.

Didnt mean to make this so long :). I understand not being able to wrap your head around it, it takes time, and baby steps, and trust me the disease will unfortunately keep reminding you :/


cameron
1 year ago

I have nothing but admiration for your strength and determination. You come over as a person who refuses to be defined by health issues. I think we can all learn from that. Big hugs and thank you for posting. xx Kay


caterpillar
1 year ago

Hi there:-) . We do not choose our genes, unfortunately, but we have to live with what we got :-/

As for the treatments: all anti-TNFs ( Remicade, Enbrel, Humira, Simponi and the likes) carry a warning that cases of demyelinating diseases (aka MS and the like) have been seen on those drugs. Methotrexate is OK for MS patients, there have been some old papers that actually described some benefit of methotrexate in MS.
Then there is Rituximab that also has been used for RA ( actual label indication) and for MS ( off label – used a lot in Sweden). Rituximab is no good for psoriasis and PsA, though. But there are other things … Aubagio (teriflunomide) used for MS is very close to leflunomide(Arava) that is used for RA and PsA, and would probably help in both MS and arthritis ( it is not a good choice for people planning to enlarge their family). New biologics for PsA(not anti-TNFs) are also on the market, but I guess nobody can say anything about how they affect MS patients at this point.

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