Had appt. with MS specialist yesterday.....what a frustration

By headachelady Tuesday, September 01, 2009

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I posted on Sunday that I was seeing an MS specialist at the Cleveland Clinic yesterday. What a joke. I am so frustrated that I don't know if I should cry or spit nails. The appointment didn't start right. The other hospital sent records on friday and somehow the doc never recieved them. The records that he did receive weren't helpful. The neuro exam wasn't very thorough. He said that my neuro exam was too normal. I had an awesome timeline which documented all of my symptoms and when everything started and all of that. I don't think he even read it. My MRI from 4/08 said that there were "white matter changes" and a "focal lesion in the right temporal lobe". The report said "these findings would not be inconsistent with the dx of MS." I don't know if the ms doc didn't read that or if he didn't agree or what.

He did say however that he would review the other records when he receives them and would call me if he needed too. He ordered 9 blood tests to check for some other things that could be causing my neuro sx. One of the things that he is looking for is Wilson's disease. I googled it and it definitely fits my sx. He is going to forward the results to my HA doc who I will see on the 24th. I asked if I should have another MRI and he said that he didn't think that was necessary. That really frustrated me to no end.

My neuro sx just used to happen with migraines, but now they are happening all the time. I have constant numbness and tingling in my hands, arms, and face. I have constant visual disturbances. I have widespread muscle pain and weakness. Horrible fatigue. Incredible heat sensitivity. And of course the migraines. The sx are also worsening with time. I feel like no one is listening to me or taking me seriously. I am soooo sick of these docs blaming everything on these blasted HAs! In my gut I believe there is something else. I know that I have migraines, but there is something else. What are they missing.......Kayleen

Comments (7) | Add comment

YaYA02

9/ 2/09 1:58pm

I have the same problems as you. I will I would finally Know what going on with me.

Teri Robert, Health Guide

9/ 3/09 11:08am

Hi, Kayleen,

Did you see that your Ask the Clinician question is answered and posted? It's HERE.

Hope this helps a bit,

Teri

headachelady

9/ 3/09 9:11pm

Hi Teri! Thanks, I did see the post! I am definitely getting a second opinion. I tried to get an appt. at the UPMC MS center in Pittsburgh. They couldn't get me in until January. I took the appt. and they said they would call me if they got any cancellations. Today, I had records faxed and sent MRI discs and more records to the MS Center at Allegheny General Hospital in Pittsburgh. They don't do self-referrals. But I sent detailed records and a letter explaining the situation. I hope to hear from them sometime next week. Hopefully the doc there will see me (Dr. Thomas Scott). If he doesn't I will definitely keep the appt at UPMC and hope that they can get me in sooner. If he will see me I am still going to keep the appt at UPMC in case he blows me off too. lol! I will keep you posted on how things go. I am so glad that I have found the website and forum - it is a real blessing to be able to keep with the latest HA news and to keep in touch with fellow migraneurs! Blessings - Kayleen

Nancy Harris Bonk, Health Guide

9/ 5/09 9:43am

Hi there,

You know, after re-reading your Shareposts, a few thoughts light bulbs went off. Now, no one wants to have MS or any other disabling disease, but we certainly want to have it ruled out along with any other "things". So, who was this MS specialist you saw the other day? I believe current thinking in MS is earlier diagnosis and treatment is the way to go. Does he just say he is a "MS specialist" or does he devote his entire practice to MS? This is what we tell our Migrainuers -It's important to note that neurologists aren't necessarily Migraine and headache specialists - the same holds true for MS specialists. Neurologists treat so many different conditions such as stroke, Parkinsons, epilspey, Migraine and others, it is hard for them to be experts in one area. It sounds like what you need is a doctor who is an expert in ONE area MS. One who dedicates his practice to the disease, goes to scientific conferences on MS and will help you determine the answers you are looking for. Have you looked into the UPMC MS center (I know it says MS center- but then again...)? Talked to anyone who knows anything about it? Check it out and see what you think? More eyes, second, third opinions are ok here. It is your health and life.

So hang in there and please let me know if I can help you.

headachelady

9/ 5/09 11:44am

Hi Nancy! Thanks for your concern. I went to the Mellen Center at the Cleveland Clinic. All they treat there is MS. The guy just totally blew me off. The neuro exam was the least thorough one I have ever had. I had put together an awesome timeline and I don't think he even looked at it. I requested another MRI, but he said that wasn't necessary. He did however do some bloodwork which I am awaiting the results. You know when something is wrong in your body. When my neuro sx just used to be with the HAs, that was one thing, but now that they are happening all the time and are getting progressively worse that scares me. I am so tired of these neuros blowing me off and blaming all of this stuff on the blasted migraines. The 2 docs in Pittsburgh that I am trying to get into are docs that only treat MS as well. As I said the one at UPMC I can't get in until January, but they have me on a cancellation list, which is promising. I am also trying to get into Allegheny General. I am trying to do a self-referral thing. I don't think they do that, but I sent as much info as I could and I wrote a letter and explained my situation so I am hoping they will see me. I will keep you posted. Kayleen

Anonymous

12/19/09 9:33am

Did they do an MRI of your neck area also (brain stem region). I had all the routine cat scans, ect...done and when they finally did an mri of my neck region including the base of my skull they found the Chiare Malformation. The symptoms sound similar to yours. Just a thought. Good luck, I also share your pain!

Anonymous

12/19/09 9:35am

I apologize for the spelling error. It is the Chiari Malformation. I should slow down with my typing.

Had appt. with MS specialist yesterday.....what a frustration

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