What to do?

SandraD · 09-24-2009, 10:06 PM

Hello, again,

I saw a rheumatologist today who said my problems are not in his realm. He does think I have tendonitis of the shoulder and elbow, though. where it came from is anyone's guess. He did note that my left leg is weaker than my right on exam and the brisk reflexes and took note of the diminished muscles in my hands, wrists, and forearms, but said he does not think its rheumatological. I told him that I have a second opinion next week with a neurologist in Boston and he suggested I might want to wait a bit longer to see how things progress before seeing a new neuro. I have seen the one neuro three times, once in May, again for the EMG in June (which was normal), and for a follow-up in early July.

Just looking for opinions on what I might do now. if you were me, would you wait a bit longer to see if my problems worsen or get in for the second opinion now? My problems are not going away, but they are not dramatically worse than in July, except for things seem to be happening more "from the neck up," which was not the case so much in the summer. I have had a lot of twitching around my mouth and chin and constant stiffness on one side of my neck. and some saliva build up off and on. the neuro did not EMG this region in June. also still have random off and on pain in legs, some neck spasms, and stiffness in legs when walking, mostly during longer walks as I go along. had some twitching in my upper back tonight, which is new for me. the twitching just comes and goes and can disappear for a week or more before resurfacing someplace. and the finger, hand, wrist weakness, which is pretty much the same as it was in summer. can do pretty much everything with my hands, but my grip is weakening and I have trouble with things like ziploc bags and ketchup packets. The pads on my feet under my toes on one foot also have been bothering me when walking-- they seem to be thinning out in the same way the pads have thinned on my hands, just below the fingers.

anyway, sorry to bore you with the description of symptoms, but just wondering what you think I should do about the second opinion. Now or later? if later, how long would you wait?

thanks--

Sandra

tdamess · 09-24-2009, 10:11 PM

no way all thou there is no treatment you need peace of mind and what little med you could use

Zaphoon · 09-24-2009, 11:10 PM

Sandra,

I don't like the idea of waiting to see how bad you have to get before anything more is done. What if you just happen to have something that is treatable or better yet, curable? Wouldn't you like to start treatments as soon as possible?

I'm for getting answers as quickly as possible. It never hurts to have a new set of eyes on the problem!

Zaphoon

Naeco · 09-25-2009, 12:09 AM

I'm with Z and TD on this one. Maybe this other Neuro is familiar with something that might be able to help or at least allow you to move forward again. Best wishes!

John

SandraD · 09-25-2009, 12:47 PM

thanks for the advice. it just helps to hear what other people think. I do not talk to too many people about what is going on with me. I am going to see that neuro next week.

Sandra

awieleba · 09-25-2009, 12:53 PM

Hi~

I dont think seeing someone new a is bad thing. Is the current neuro you see familiar with MND/ALS? If so, then maybe not. I went through the same issue this spring. I go to an ALS center at a teaching hospital. I had thought about going to the Cleavland Clinic but then changed mind. I felt like my current nuero was more than compentent and had been seen by her partner as well. She did 2 emgs a year apart. Mri's form brain to tailbone, boats load of blood work (more than my gp or rhuemy) and a muscle biopsy. Still, no dx. I thought I needed a new a pair of eyes, but then I felt like since I had seen her from the start that she would notice any changes that are good or bad. It is hard to just let things play out, I know. But, that is where I am. I go every 6 months. I mean if your tests dont show anything and your clinicals are not showing anything drastic, what will it show at another neuro? The only thing I had thought about for me was seeing a doc who specializes in Myopthy or getting some genetic tests done. I have alot of what you have, the thinning hands, wrists, forearms. It is in both my hands and in my feet. I have lost padding in hands and my feet. My feet hurt alot. BUT, they hurt more in the start and seem to be the same and not worst in the past year. I have neck spasms and pain in my back alot. My doc said she thought my mild atrophy in hands was mixed conective tissue loss, she could not say what else. My rheumy thought my problems where not in his realm either.
I guess you have to do what is best for, I just got sick of seeing all the doctors. I do think a 2nd opinion may be good for you if you have doughts about the current one. I know its hard, but be happy that they arent finding anything even though you know there is 'something'.
Hang in there, I am and I am still active for all this crappy stuff infiltrating my body!! (well, not as active as I would like, but still very gratefull for what I can do)

april

SandraD · 09-27-2009, 10:36 AM

Hi,

thanks for the advice. Today I am having a lot of saliva buildup in my mouth again. I decided I am going to seek that second opinion. This has been going on between 6-8 months, not sure exactly when it started and I have only seen one neuro and had one EMG, so I think a second opinion is in order. I thought it first started with the hand stiffness and weakness in March, but then a friend of mine reminded me that last Dec or Jan I started to have cramp-like pain in my torso, which went away, but was followed by the hand stiffness and twitching and now all this other stuff. I never made the connection that the pain in my torso could be related to all this. the only "abnormality" in testing so far has been my brain MRI, which showed a few scattered hyperintensities or "lesions," which this neuro did not think were clinically significant.

I would like to see what someone else has to say.

thanks--

Sandra

tdamess · 09-27-2009, 02:09 PM

glad to hear you are going to get the 2nd opinion , keep us updated please

Almasch · 10-04-2009, 06:54 PM

So sorry to hear about your son. It is so sad when this awful disease hits the young people. My husband has it and will be 79 next month and it is still hard as he has been healthy all his life up until last year.

Hang in there. Alma

tdamess · 10-04-2009, 07:16 PM

thank you.... it's hurts us all to have this for one of our loved ones no matter the age just seems crueler to hit the young ones and then again it is a cruel disease