Suggestions for the undiagnosed...

[Just J]

Hello All. I found this forum after doing research today on symptoms that my husband is having. We've been through 2 yrs of hell and no diagnosis (I'll try to be brief). About 2 yrs ago he began having major numbness in his feet. By Aug 2006 his mobility got so bad that he had to give up his favorite passion, golf. Yes -- we were going to doctors since Jan 2006 Orthopedist and Neurologists. He has been tested for Lyme's disease and MS. He had surgery in Jan 07 to releive pressure on C4, C5 (fusion) and again on Oct 03 to re-do surgery and include C6 in the fusion. Result NO RELIEF of symptoms. We are in the Baltimore area and are dealing with Johns Hopkins Doctors so felt like we were in good hands. Long story short...after 2 surgeries there has been no relief. His primary symptoms are complete numbness in both legs, stiff legs (he cannot bend at the knees). He has to pick his legs up to get in bed. Has constant muscular cramps in legs and constant fasciculations in legs. Has major instability in walking and difficulty goiong up and down steps and standing in the shower. He has no muscle weakness in his upper body or hands so we assumed that ALS was not a possibility but after reading some posts I am not convinced. BTW - my husband is 58.

He is going to try to get back in to see another doctor. I saw the recommendation to see an MDA Neurologist...any other suggestions? It is much appreciated.

 

[Peg B]

Hi,

I have had symtoms since 2002 from weakness in right hand and atrophy of baby finger. Went to two neuros. (No ALS, no MS) In 2003 I fell on black ice off the porch and my left leg went numb a month later. Back operation on L5 and L6, but not fusion. So...(fast forward) DX ALS last halloween. But then DX changed at ALS clinic to "Atypical ALS" or Multifocal Motor Neuroapathy. My limbs test positive for ALS but no upper motor stuff. So there are other things. (I thought my problem in my legs was arthritis getting worse.)

For the cramps the tonic water works great for me. It has quinnine. Put lime with it.

You are right about the MMD doctor, I have read that too. Most important to get the ENG/NVC tests. If they ruled out MS did they do those tests? That's all I have but others will write and be of great help. You are in my prayers. Peg

 

[Just J]

Thank you Peg. Spinal tap was done in Aug 2007 and ruled out MS.

 

[crystalkk]

hi,

Sorry to here about your husband. I have no diagnosed yet either.
When you say complete numbness in both legs Do you mean no feeling at all with pinprick test.
Numbness is usually not a sign of ALS.
Did he have emg of his legs?
How are his reflexes?

 

[shopathonic]

Is this the doctor you saw at Johns Hopkins? If not, he would probably be the best person to see for a definitive diagnosis:

MDA/ALS CENTER AT JOHNS HOPKINS UNIVERSITY
(410) 614-3846
(410) 955-0672 FAX
Jeffrey D. Rothstein, M.D., Ph.D., Director
School of Medicine
600 N. Wolfe St. Meyer 5-119
Baltimore, MD 21287-7519

 

[Lorie]

New Members

I know how you feel. I have the same symptoms that my brother Timothy had for 7 years before they suspected ALS. (muscle cramps and twitching) Dx 2-1/2 years ago. He is still living, he can walk with little baby steps with help. He can carry on a conversation better than most normal people and can eat very well. Most of the time he has A Great "Will to Live" the Personality and Attitude to accept as much as he can.


The one thing we shouldn't do is: Never Give Up!


It is great to have you here, in an unusual sense. You are in the right place. There are a lot of Wonderful, Loving People here.

By the way, Timothy has Neuropathy wity his ALS. (numbing/no feeling in different areas) just to reply to the other post.



Sincerely,
Lorie:-D

 

[Just J]

Just an update. We do plan on seeing Dr. Rothstein at Hopkins and hope this is all a huge mistake. We were happy that he didn't have MS...I shriek at the thought of ALS. It is too mind numbing to thinkg about right now.

The numbness in his legs is dibilitating. He can walk but with much difficulty and for not more than a few minutes. We recently submitted for handicap tags for our cars. Some days he can not go up or down the steps. He is very wobbly and unstable on his feet and has fallen a number of times. Tremors, leg crambs, and fasciculations all present. This is so frustrating b/c my husband was an athlete his whole entire life baseball through college, tennis in AAA circuit and then golf (at least 2-3 times weekly). He also used to work out regularly for average of 5 hrs per week. Now he can barely stand the treadmill for 3-5 minutes (God love him...he is still trying). He had to give up golf in Aug of '06 and here it is Nov '07 we still do not have diagnosed.

I am thankful for this site and all of the people who are here. I wish the best for all of you and will keep you posted.