Been suffering for 15 years, is this MS?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Been suffering for 15 years, is this MS?

Postby BackwardPawn » Thu Jul 17, 2014 9:56 am

I really need some advice, as I can't continue suffering the way I have been (sorry if I double post, but something seemed to go wrong with my first post). My symptoms started back in high school with muscle stiffness, headaches and blurry vision. The neurologist I was seeing said that I had TMJ pushing on nerves and my stiffness was unrelated and probably arthritis. The stiffness was dx'd as Ankylosing Spondylitis, but after several years with very little ankylosing, that was taken away.

In college I developed trouble walking about 50% of the time and was using a cane during the periods I couldn't walk well. I developed blurred and double vision during college as well. When I stopped breathing during hip surgery for hip impingement, I was diagnosed with Myasthenia Gravis. The orthopedic said he wouldn't do the other hip unless I saw significant benefit from the first surgery due to the complications. Unfortunately, I didn't really see any benefit, and ended up using a walker most of the time, with brief periods of being able to walk almost normal. I didn't respond well to the MG medications and they eventually did a thymectomy to see if that would improve the symptoms. The surgeon said my thymus gland looked abnormal, but not tumorous or anything that would have shown up on the CT scan.

As the muscle stiffness was becoming more severe, my current neuro dx'd me with Stiff Persons, but was never sure about it. One of her colleagues is positive that I do not have it. She sent me to Mayo for a third opinion and they said it was inconclusive. I have stiffness, but not what they expect in SPS and my antibody count is in the diabetes range, not the SPS range. They left the SPS dx, though, since they didn't have a baseline from before immunosuppressants and they said the benzos could be altering the way the stiffness presents. At the time my gait was extremely stiff, but they did PT which resolved it once the benzos helped with the stiffness.

In the last year, I've developed a range of new symptoms. My fatigue has turned into extreme sleepiness, my eyelids no longer open without extreme effort, I have periods where I'm unable to void my bladder (which I had before, but are more frequent), so I need to cath frequently, and developed mixed sleep apnea. Also in the last week i woke up and was unable to walk again. This time I'm not as stiff, however, and my gait appears more ataxic. The eyelid symptoms are helped by the amphetamine that my pulmonary doctor is prescribing for the sleepiness, but it was really luck that led me to that solution. I don't know if the walking problem is the same symptom or something new, as it resolved for nearly a year after I was put on benzos and did PT. Its worse than the previous episode, as I could use a walker fairly easily before, now I have trouble coordinating my movements even with the walker. My GP didn't know what to make of it and I haven't been able to talk to my neurologist, who must be out of town. At my last visit she didn't know what was causing the new symptoms, other than to say its not Myasthenia. Personally, I don't think I have SPS, but something else that has stiffness as a symptom. I'm working from home since I can't walk well enough to get into work, but can't keep this up forever, and whenever I think this can't get worse, it does.

Does this sound like MS and if so, is there a doctor in the DC/Baltimore or Charlottesville/Richmond area I should see? Any help is appreciated.
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Re: Been suffering for 15 years, is this MS?

Postby ElliotB » Thu Jul 17, 2014 1:20 pm

Can I ask what kind of diet have you been following? Are you able to exercise at all?
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Re: Been suffering for 15 years, is this MS?

Postby BackwardPawn » Thu Jul 17, 2014 3:59 pm

ElliotB wrote:Can I ask what kind of diet have you been following? Are you able to exercise at all?


I try to eat healthy, but don't follow any particular diet. I could probably use a stationary bike or the pool at my gym for exercise, but haven't tried this week. Until this week, I'd been using the elliptical, but I'd be afraid to get on that right now. My deficit seems to be in my forward gait, but other movements are either not affect or not so affected. I'll go to the gym tomorrow and see what I'm able to do.
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Re: Been suffering for 15 years, is this MS?

Postby ElliotB » Thu Jul 17, 2014 4:34 pm

Some basic suggestions...

Get your vitamin levels check, especially your D and B12 levels. Consider taking supplements.

Follow some kind of MS diet, most of them are very similar. Consider Dr. Swank's, Dr. Terry Wahls, Best Bet, Paleo - something. And follow it without cheating. Keep in mind that 'healthy' means different things to different people, especially experts. Nobody knows for sure or can agree on what is truly healthy, but for MS and similar illnesses, low saturated fat diets are usually beneficial. Foods high in Omega 3 fat are considered beneficial.

Exercise as much as possible and very, very regularly. If you have not been following any kind of exercise program, start off slowly - don't over do it and don't get hot over overheated IMHO, swimming is the best exercise because you can get a great workout and stay cool. Walking, if you can is also good to start with and if it is warm outside, wear a cooling vest. If you can only walk for two minutes, today, try 3 tomorrow. And then 4 the following week. And so on.

Whether you have a diagnosis of MS or something else or not should make no difference in how you proceed at this point. Doctor's cannot really do much anyway. Your health, good or bad, is ultimately in your hands.

Good luck (although there is a saying 'the harder you work, the luckier you get!'.
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Re: Been suffering for 15 years, is this MS?

Postby BackwardPawn » Fri Jul 18, 2014 1:31 pm

The one thing I've been thinking about where the walking is concerned is osteoarthritis. I had a hip repaired several years ago and the surgeon was shocked at how warn out my hip was. He said I had some years left, but to expect premature wear. I didn't think he meant this soon, but I think I should have this ruled out as the cause of my hip pain/walking trouble. It doesn't account for the other neuro symptoms, but it could be two completely different problems.

I do plan to get my B12 and D checked. I've had chronic problems with D and I don't think the B12 has ever been checked.
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Re: Been suffering for 15 years, is this MS?

Postby ElliotB » Fri Jul 18, 2014 5:25 pm

Do you have access to a pool?
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Re: Been suffering for 15 years, is this MS?

Postby BackwardPawn » Fri Jul 18, 2014 6:36 pm

ElliotB wrote:Do you have access to a pool?

Yes. I actually just got back. I haven't been able to walk for a week, but decided to force myself to get some exercise. I'm very sore, but can walk and move my hips normally right now. Since last Friday, they've frozen up at about midpoint in my stride and pretty much just collapsed. Even with a walker, I was getting very far because I couldn't take a full stride. I'm not sure if its neurological or rheumatically, but the swimming did help. I hope my legs don't freeze up again overnight, but maybe I need to start adding swimming to my morning routine.
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Re: Been suffering for 15 years, is this MS?

Postby ElliotB » Sat Jul 19, 2014 2:42 am

Are you taking some kind of joint supplement?
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Re: Been suffering for 15 years, is this MS?

Postby BackwardPawn » Sat Jul 19, 2014 7:23 pm

ElliotB wrote:Are you taking some kind of joint supplement?


Nothing other than fish oil.

Swimming seems to have had a temporary effect. I was OK last night and this morning, could walk normally, etc. This evening, I noticed my leg muscles, especially around the IT band area had less flexibility. In the last couple hours, though, just sitting on my couch watching TV, its felt like they're being pulled tight. Its really uncomfortable and my walking is getting back to how it was yesterday.

I just took some Baclofen, hopefully its helps. Wish the pool was open late Saturday...will have to wait until the morning to go. :sad:

Is there a point that you go to the ER with this kind of thing...my legs have felt like rubber bands about to snap for over a week now, and I thought maybe the exercise had loosened them up for a while? Or do you just suffer through it and try to manage?
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Re: Been suffering for 15 years, is this MS?

Postby ElliotB » Sun Jul 20, 2014 12:14 am

You might want to consider taking a joint supplement. There are many available. They don't necessarily work overnight and will not help on artificial joints and may not help much on joints with a lot of damage (but you never know).

I swim just about every day and feel noticeably better over days that I don't, so you may want to consider swimming regularly. Have you tried simple stretching when you cannot swim and feel tightening of your muscles? If not you may want to give stretching a try and do it before they feel really tight.
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Re: Been suffering for 15 years, is this MS?

Postby Misstazz » Tue Jul 29, 2014 11:03 am

I am sorry to say, you may have SPS. It is misdx a lot. A low antibody counts does not diagnose it. You can still have it. I have both SPS and MS. And you are displaying many SPS simularities. The May Clinic is strict on their diagnose. If you don't reach a certain point, they say you don't have it. But you can. I have a low count, and I am negative on every test they've given me. I finally found a nur. that said if someone giving you a test isn't looking for SPS, they won't find it. When he first saw me and looked at all the test results, and said, " I'm not saying you don't have it, but I don't think you do." Then I went into full body spasms and after 5 min of that he offered to send me over to the ER - I declined. He then said I had SPS. But that's what it took to convince him. The fact that you respond to Valium is a BIG point. That is a main med. Next is IVIG. That has worked like a miracle for me. Check out this site. https://www.facebook.com/groups/486863058084968/ Ask there.....
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