Experiencing weakness

[mistylee]

Hi there,
I am new here. I have been recovering from my third relapse of MS like symptoms. My neuro thinks MS but still undxed.
My question is ...since I have been recovering I have not regained my strength back in my arms , hands and left  leg, particularly the left side.  I can only manage light housework but by the middle of the day my arms and legs are so weak . The next day I feel achy and my ankles feel like I have sprained them but all ive done is walk around the house. My wrists feel sprained and my hands stiff and sore. The weakness was only on the left arm, hand and leg  during relapse but seems to be both arms, hands and left leg now. It has been about 3 months since the relapse started and the worst of it lasted about 6 or 7 weeks. If I just rest all day I feel a lot better.
I am very concerned that I wont get the level of stamina back that I had and be able to do the things I could before. Does this sound like how weakness affects people with MS???
Also my arms and legs ache if i dont rest throughout the day. I am only 42 so this is really concerning me.
My first symptoms started 4 years ago and I have about 20 lesions in the brain , the biggest being 4mm, but all are in the subcortical area and not typical areas for MS. None in the spine.
My neuro exam shows hyperreflexia in legs with susstained clonus in both ankles. Also positive rombergs and some trouble with heel to toe walk. But nothing too bad my neuro says but he hasn't seen me at my worst lol.

Any thoughts on this would be appreciated.

Mistylee

[michelleric]

Please find yourself another neuro. Doesn't sound like you are getting very good treatment. Lord, 20 lesions?! and "not in the right area". Time to run and find someone else. Don't  worry about offending him. You need to take care of yourself, and staying with this doc is not the answer.

Let us know how you are doing,

MIchelle

[Erin0313]

  What a kunundrum. It is important to like your doctor and you seem to like this one. I just left one after 14 years. He was a doll but after careful consideration we realized that he just wasn't up to date on the care issues.

I don't think that he even knows that I left, lol. I just didn't schedule a next appt. and then figured if I changed my mind I could go back and he would be none the wiser. Do you think you could get away with something like that? I really do think you need to see another neuro but understand the pinch you are in.

Also you said that you have a regular doctor right? Maybe you could schedule an appt with him and ask him these questions. What are the guidelines for DMD's and MS, what haven't I been tested for, what meds could I be taking to help me both now and down the road.

Sorry I don't have answers and I am not familiar with your healthcare system but don't just give up!

Ok I guessed that you live in New Zealand. If that's right go to this website when you get a chance www.msakl.org.nz/ms-treatment.html

On there it says that DMD's can be presribed to you by your regular doctor and it gives scoop on taking them early to slow/stop progression. Maybe if you get enough scoop you could question your neuro armed with this info.

Good luck - hope it helps
Erin :)

[Mand125]

Hi Misty

Your neuro may be a nice guy but I think you need to change to another one - pronto! - I understand you when you say you don't want to offend him but how offended will you feel if you find out in a few years that it is MS and that DMDs would have helped if given earlier.

Having said that I sincerely hope it isn't MS but something much more easily treated, however, to quote someone from this site - "if it looks like a duck and quacks like a duck........"

Mand

[cainer]

  sure feel for you-  get another neuro- dont stop till you get some answers /  you have your future to think of.  plus the not knowing is to much stress..   be welll  tick

[mistylee]

Hi again,
Thanks for the help. I really feel in my gut that it is MS. The thing is Erin , I asked him if having a firm dx would change anything at this time and he said no except I would have an answer but I would not be allegable for meds?????  Dont know why ...I think it is only given to people with more advanced MS here in nz as it hasnt been proved that giving it early on is benificial???(according to the neuro)

Seems to be the oposite to what ive heard on this site so I'm really confused. As I wasnt going to get any help with meds I was thinking that I will just have to wait for the next relapse, more MRIs , to see any changes.
My neuro s specialty is parkinsons. I dont know that we even have MS specialists over here. I was thinking about asking if there was one for a second opinion but I dont want to offend him as he is really nice and you hear so much about the bad ones I dont think I can afford to get him off side as he is one of the best.

Verycool.... I also have spasticity with the weakness but only in my legs. I hope you get answers soon too.
Lulu do you think that because the lesions are atypical that is why he is hesitant to dx?? But like you said if not ms then what else?? I did ask him this and he said some people just get funny mild sensory symptoms and they just go away and never progress into any thing more except my symptoms are also motor and not so mild during a relapse as far as im concerned.
And how does he explain the hyperreflexes and ankle clonus?? not to mention all those lesions that according to him could be age..migraines..head injury  hahahaha
thats funny cos I dont suffer any of those and at 37 at the time of lesions showing I hardly think age is a factor!!

Mistylee
xx

[Erin0313]

  Hi & welcome :)

  I feel frustrated for you. I was in limbo for over 14 years before my dx and 8 of those years was after 2 doctors in the same practice couldn't agree. One said MS for sure & the other (his son) said no way.

I didn't know enough at the time to ask about mimics but you do/did and your doc sayd that he has tested for them all & is not looking for something else.

What the heck good is he doing for you??? I know that it is hard but maybe you should have a conversation letting him know that you are not willing to stay in limbo if nothing is being done to find answers. If he isn't ok with that then maybe it's time for a new doctor that is.

Good luck & keep us posted on your progress

Erin :)

[Verycool2009]

Mistylee: I don't know that I can be any help to you, but I almost cried reading this.  I have the same problems.  I describe it as feeling like my wrists and ankles are sprained.  My left side is worse.  I  have spasticity and weakness.  Just hearing someone else say it helps me realize it is real and I'm not crazy.  I had a normal MRI of the brain recently.  I see a neuro on 10/20.  Hopefully will have some answers then.  Thank you to everyone on this site willing to help us newbies.

[Lulu54]

Mistylee, a  while back in the not so distant past, neurologists used their diagnostic skills to make a diagnosis and did not even have the use of MRI mahcines.  Those didn't even exist.  The doctor owould look at your symptoms and decided if you did or didn't have MS.  pretty simple, huh?

The lesions do not have to be in specific places, but it helps because it seems atypical presentations throw all but the best neuros off their game.  

Your symptoms sound so much like MS to me, and since the mimics have been ruled out, it doesn't leave much else that this could be.  Keep searching for the answers because you deserve to know what is wrong with your body and to have a fighting chance to fix it.

my best,
Lulu

[mistylee]

My first relapes I had weakness in the lower legs with differculty walking which came right after a few months. My second relapse a yr later I had Trigeminal neuralgia. Then nothing for two yaers and then this weakness in my left side mainly.  As well I have had burning left eye with blurry vision, burning soles of feet, burning left palm, falling over a few times, feeling out of balance lilting to the left, vibrations , crawling insects, numbness etc, clumsy droping things, sore neck and back, to name a few.

Does a history of relapses with these MS type symptoms and 20 lesions in subcortical area with positive rombergs and hyperreflexes in ankles with clonus met the mcdonalds criteria for MS or do the lesions have to be in specific places to qualify???

Thanks
Mistylee xx

[jensequitur]

I agree - there's something going on, and if your neuro isn't willing to sign off on a diagnosis, then you need a new doctor.

Personally, I've had problems with weakness since day one of my diagnosis.  I have never regained the strength I once had in my right arm or leg, although they are improved over a couple of years ago.

[Lulu54]

it sounds like if your lesions don't scream MS then you need to be screaming it to your doctor or find another neuro to see.  Just leaving you hanging with symptoms and no dx is not fair to anyone.

L

[mistylee]

Hi Lulu,
I have been tested for all the mimics and all negative. The neuro says possible MS but when I ask him if he is looking for anything else he says no!!!
I think he just doesnt want to committ to dx of MS as lesions dont scream MS ie showing up in the brainstem or corpus collosum or cerebellum.

[Lulu54]

oh, and I didn't address the question of weakness.  Yes, this could be from MS.  The way these symptoms play out for everyone is so individual, but weakness is very common.

[Lulu54]

Hi Mistylee and welcome to Medhelp's MS forum - this is a great place to hang out to learn and/or commiserate about this MiSerable disease.

I honestly don't understand how your neuro could leave you without answers for four years when you are having these type of symptoms.  Even though your lesions may not be in typical areas, there is no hard and fast rule that lesions can't occur in atypical areas too.  

Have you been tested for all the mimics?  There is an excellent health page here (yellow icon, upper right side of this page) on the subject of MS mimics.  

your symptoms all sound like they could be from MS - but you have to rule out other disease processes too.  

You might want to check out the new post that Quix is working on about Things Neuros say ....   I get the impression that you have enough to call this thing MS now but your neuro has some reason why he won't.

I hope this makes sense.  Welcome again and I hope we will see  you around.

my best,
Lulu

[mistylee]

Just bumping