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awieleba

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Hi Guys!

Well, most of you know my loooong story so I wont bore any with details.

I am seeking your wonderful advice about my next step in this process. I have made an appt with the cleavland clinic (about 4hrs away) for Feb.4th. I am due to have a repeat emg with my current als nuero 'sometime' in the spring she said. My first emgs were within one month apart (may 08) and at the very start of this (or at least for what I know).

I think that I would like to vist this new clinic and have a new set of eye's on this. I checked and this is a VERY reputable als clinic in my area. I would like my next emg done here and I have requested a single fiber one. When I saw this current doc, by all standards I was very anxious! I just had a baby and was very sick with some infections and scared. I feel like she cant get that nervous lady out of her mind. I have since went on lexapro and have a grip on my anxiety. Yet, all the sx have gotten worse. I have given it time like she told me to.

I guess my question is this, should I stay with the als doc that has seen me since the start? SHe would know any changes etc. And she is at a university clinic and does research. Her father passed from this diagnosed. (vested interest) BUT, when I saw her in fall and she saw my hand atrophy (and noted it was there) she just blew it off as mixed connective tissue loss or 'pinched nerve' (oh Zaphoon, I wish and I swear she said that! but she saw all my clean mri's). She does not explain anything to me and wont even tell me what my reflexes are, just that they are brisk. I had my chart sent from emg day and it was wrote down as 2 of 4. Ithought it was out of 5, so I wonder if that means 3 of 5? When I asked her she told me my relfexes were 16! Oh, so funny..when I ask questions she says that she wont 'teach' me anything more than what I already know!

I think that a new nuero may help me or explain things or try things. I just dont want to waste my time by going and getting the same story. My husband has to take off work and we have to get sitter for kids, blah blah blah.

I was gonna do nothing at all anymore but my hands have got worse and I feel that I need to try one last time. I thought that I would go to the cleavland clinic and see what goes and then be done with it. I would go to rhuemy and infectious diagnosed doc and get one last auto immune panel and test for lymes and then be done with that...

I feel that my hands are so bad (relative to what Is normal for me) and I have more muscle loss in thighs. Kinda all over bulk loss. I wont go into list of all other progressing sx!If the emg is clean then it will give me some piece of my mind. I do have scattered lesions in the white matter of my brain that have been told were nothing....wonder about that, ms ruled out.

So, in a nutshell.....do you think that it is a waste of time to go to cleavland and I should stay with my current als doc at a teaching university hosp?

I appreciate any adivice or opinion on this.....this would be 2nd als nuero but I did see a local neuro. I 'think' that if I go here and it is the same as the other place then I can put this to rest and understand that I may the 'cindym' diagnosed (JK) or at least know that I do have something but so far it is not als.?

Gratefully,

April
 

wright

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People from all over the world go to the Cleveland Clinic because it is as good an institution as there is (its reputation is right up there with Hopkins and Mayo). If you are unhappy with your current neuro then I would change, and to change to an ALS specialist at the Cleveland Clinic is more than likely an upgrade (although I don't know who your neuro is in Michigan, so I'm not certain of that).

I can tell from what you have written that your gut instincts are to change and start with new physicians and I think you should go with that instinct. That is what I would do.

Have you had an X-ray or MRI of your upper chest / brachial plexus area? If not, you might want to suggest it, although they will more than likely think of it themselves. It could shed some light on your condition.

Good luck with you decision and your visit. Take care.
 

Zaphoon

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April,

I vote for the Cleveland clinic. As you've stated, it will be another set of fresh eyes looking at you and you eliminate the possibility of feeling like you've not been taken seriously again by her (the regular neuro).

Zaphoon
 

rose

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April,

Cleavland Clinic! Do it, stay in a nice hotel with your hubby, and hope for the best. :wink:
 

suzannj

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April: I vote Cleveland too! :) I agree with Wright, when I read your post I thought, "She's already leaning toward the CC, so why not go?" If you have your appointment, then go for it! :) A fresh set of eyes is almost never a bad thing, and the CC has an overall excellent reputation. If you have an opportunity to take advantage of their expertise definitely do it. On a side note, I did not realize that you had gotten worse, and I'm so sorry to hear that April. I was just thinking of you today because my son was being his very, very, very, very (did I say very yet? LOL) active little self and trying to get him dressed is like trying to put a wildcat in a paperbag......I had a challenging day today (not feeling that great) and got a little short with him and then felt really bad because he was just being super silly. And then I thought, "How oh HOW does April do this with THREE kids when I'm having a hard time with one?" :)

(((((Suzann)))))
 

rocmg

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April, I guess it's unanimous! I definitely think you should go to the Cleveland Clinic. While I know local doctors are great and I value their help a lot, you need to engage the advice of a specialist -- someone who is used to dealing with these types of illness everyday and have seen the full spectrum and many nuances of neurological disorders. Only then can your mind and heart be put at rest.

god bless.
 

planningguy

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April,

Your post comes at an interesting time. I have been strategizing in my mind regarding the next steps I should take myself. Last time I saw my neuro we discussed a little bit about what we would do if the mito study comes back negative. He told me he would refer me anywhere I wanted to go, and mentioned both the Mayo (Scottsdale) and a return trip to the U of U. He also said he would be happy to see me, and that we could do checkups every couple of months to watch and evaluate changes.

Since I was planning on calling on Monday to get the mito lab results, I wanted to have a decision made, and was mulling making a similiar post. Looks like you've saved me the trouble, and let me add to the resounding chorus urging you to go to Cleveland.

Best of luck. February will be here before you know it!

Robert
 

lydia

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April, I also vote for Cleveland even though I am probably the last one to give advice on this. I have to tell you-your neuro's comment about not teaching you anything has me burning up inside. And I only just got over my last doctor visit, or so I thought.

I am only about 3 hours from Cleveland myself and had been wondering if I might end up there eventually. Will wait and see what comes from the Mito stuff (crossed fingers).

Lydia
 

crystalkk

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April,

Please go to the Cleveland Clinic. Try and have your Emg's done while you are there....
Were you able to make an appointment on your own or did you have to be referred by dr?
April if your reflexes are 2 out of 4 they are normal. Was that on your most recent exam?

I am having the single fiber emg test done mid January by ALS specialist (He stopped doing them but wants to do one on me, he is confused about what i have going on.) He said if it was ALS I would have progressed much more by now. ( I did he should spend a day with me) But he does explain things to me when I ask questions.
 

awieleba

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Thank you everyone!

I really do want to thank you all for your response! It means so much to me. It seems in these confusing and nerve racking times that the people who understand the most are right here! I just dont think anyone can relate untill or if they have something going on with them.

I am going to go to the cleavland clinic! I feel that it will help over all with everything.

Wright~no, not had that x ray, just about every other mri on my back and brain.

Suzann~ I dont know how I do it either! I have the kind of boys that last sunday got into a fist fight in line for communion infront of the whole church...nice.

Robert~good luck with results and go to Mayo if results dont shed light

Crystal~I did not think that 2 0f 4 was bad, but she said that they were brisk.That was in may at the start of this. I believe the day of my emg, a diff. neuro did the eval and wrote that. When I asked if my reflexed had changed from may till oct. she said 'well, I think they are the same or better a little better, not sure'...oh, okay. and that is when she would not tell me the exact numbers. Believe me thighs are brisk, if i slap them while talking my leg shoots up! I think she is a nice lady but just does not want to stress me out, but what stressed me in not knowing answers to my questions.
Good luck with your single fiber and let me know what to expect.

I am trying to arrange to have it all done at the same time over, eval and emg.

SO, it looks like the saga goes on! Even though in alot of ways I have progressed I still can do all the things that I did a few months ago (not anything phyisical). It is just more painful or hard with the hands but I am thankfull that I am still busy with my family and doing it all. Albiet, alot slower.

thanks again, your support means so much to me in this time of my life.

april
 

sdsyd

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April-

I agree. One more opinion isnt going to hurt, I have read good things about the Cleveland Clinic. I hope they find out once and for all what is going on with your body. I will say some special prayers that you get in with the right doc at the right time and the right answers.

Love,
Cindy
 

sdsyd

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P.S. Robert- the offer is still there to hop in our Suburban and head to the University of Colorado ALS/MDA clinic with us!
 

lovelily

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Hi April...Well, it looks like you have made up your mind. Good! Never go back....always move ahead! I will keep you in my prayers, for a treatable answer!
 

planningguy

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Cindy thanks for the offer. If I knew that it wouldn't put someone out at the clinic I would certainly consider it.

Robert
 

brendapals

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April,

Yeah, I'm back from a weekend with the girls in Nashville, by girls, I mean 3 other nurses from work! anyway, I'm just now getting back on the forum.


And yes, looks like you're going to the Cleveland Clinic. A fresh start with a new year, a new dr, yeah, I think you will be very pleased. Like rose said, get a nice hotel, enjoy the time away from the kids (lol), you will be fine.

Know that I'm keeping us all in prayer,
hugs,
brenda
 
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