My Brother

[DCL1964]

My brother was just diagnosed with ALS. He's going to get a second opinion but I discovered this site and wondered if anyone here has the same symptoms.
1-tightness across his chest
2-numbness predominantly in his left hand but some in his right hand
3-swollen legs
4-slight trouble walking and climbing stairs
5-can't get comfortable in bed
6-clothing irritating his chest and arms
7-pain

He has been diagnosed with Pulmonary Hypertension and Sclerodoma, none of which are causing these symptoms according to his doctors. He also had neck surgery in January 2008 for herniated discs.

Are there varities to ALS symptoms? I'm very concerned for him and am just looking for answers.

 

[halfin]

Hi, and welcome to the forum. Sorry about your brother's diagnosis. Generally those kinds of symptoms are not related to ALS, except for the problems walking and climbing chairs. ALS is a disease of the "motor neurons", which are the nerve cells that carry signals from the brain to the muscles. It does not affect sensory nerves and cause pain, numbness, irritation, sensitivity, etc.

I would definitely encourage your brother to get a second opinion, given all these other neurological symptoms that are unrelated to ALS. There are other diseases which affect both motor and sensory nerves and which are much less severe than ALS. I would try to keep up hope that he may have something less serious. Be sure the 2nd opinion is with a doctor who specializes in ALS and motor neuron diseases. You can contact the ALS Association or the Muscular Dystrophy Association for a list of clinics in your area that have this expertise.

Good luck and I hope your brother gets some better answers about what is going on.

 

[Al]

Hi DCL. Sorry about your brothers symptoms but some of them sound more like restless leg syndrome than ALS. I'd vote for a second opinion at an ALS Clinic. A lot of General Neuro's don't see a lot of cases of ALS. Tell your brother to hold off on doing his will. He may have something treatable.

AL.

 

[shannon1966]

If your brother is in Virginia, contact either GW's, Riverside's or UVA's ALS clinic.

If your brother ever served in the military, and is in Northern Virginia, have him contact the Veterans Medical Center at 50 Irving St., NW, Washington, DC. and speak to the neurology social worker so that she can assist him in his admission process.

Let me know if you need any further direction. Hang in there.

 

[DCL1964]

We had some women from MDA out at the house last Thursday. They told us to contact a Doctor in Georgetown who is acredited by MDA. My brother called on Monday (3/22) to try to get an appointment for a 2nd opinion. He called their scheduling # and they gave him another number to call about 2nd opinions. He called, left a message and hasn't heard back from them yet.
Does ALS symptoms come and go? I ask this because whenever I take him down to VCU to see his Doctors (about 2 hours from my house) he gets stiff and, in his words, feels like crap for a couple of days afterwords.

 

[Al]

It doesn't come and go. If you have it , it stays. Like I said earlier, maybe he doesn't have it.

AL.

 

[Marjorie R. Wilcox]

My 2 cents.... sounds more like congestive heart failure than ALS.

 

[lydia]

DCL,

When you say your brother gets stiff and feels like crap for a few days after going to the doctors....I bet that is from sitting in the car for the ride. I do not have ALS but do have debilitating spasticity issues. Driving to my daughter's college wipes me out for nearly a week (12 hours round trip), especially on the right thigh and calf (the constant up and down motion of the foot on the brake and gas pedal). I have learned to avoid doing certain things that exacerbate the spasticity. So in that sense, it isn't that the symptoms come and go, but that they are always present, just made worse, and hence more visible, by certain activities. I can lead a semblance of a normal life by being very careful not to participate in activities that provoke the spastic monster within!

I sincerely hope his second opinion negates the first.

Lydia

 

[Zaphoon]

Lydia, I can relate to the right thigh, foot, etc. on a long drive. The car I just took a trip to Georgia in doesn't have cruise control and I paid dearly for that one! I expect to be able to have better use of my right leg next week.

 

[DCL1964]

My brother hasn't driven his truck in almost a year. This is just from sitting in my car and going 2 hours each way.

 

[DCL1964]

My brother is scheduled to get a second opinion on Wednesday (Apr 7) at 8:30am by an ALS specialist in Georgetown.

 

[Moonmark]

DCL--

Good luck to your brother. I hope it is is something treatable.

take care--

Sandra

 

[DCL1964]

I'm leaning towards this beeing a complication from his sclerodema causing Nerve Compression Syndrome.

 

[DCL1964]

Doctor in Georgetown thinks it's ALS and he's an ALS specialist. We still don't think it's the right diagnosis. Allan rolled over in bed last night, heard a popping sound and says his chest and arms are worse this morning than they were yesterday. I"m getting fed up with all this running around. The doctors don"t seem to listen to what he has to say when describing his symptoms. Does ALS make you feel worse after a 2 hour car ride? Everything I've read says NO. Does ALS cause nerve sensitivty making wearing shirts feel like someone is sitting on you? Everything I've read says NO. Does ALS cause numbness in the arms and tightness across the chest? Everything I've read says NO. We're so frustrated by all this. I don't know who to turn to for answers or help. I'm so stressed at this moment worrying about what may or may not happen. Who can I turn to next?

 

[jspec]

My vote is to go see the best. You live about an hour and a half from Johns Hopkins in Baltimore. According to "U.S. News & World Report," they are ranked the #1 overall hospital system in the U.S. and #2 in neurology. Johns Hopkins has topped the list since 1991.

I received great care and an ALS all-clear from the Mayo Clinic in Florida. The Mayo Clinic in Minnesota is ranked #2 overall and #1 in neurology. I hope your family gets some much needed answers soon. I know how tortuous the waiting game is.

P.S. - I, too, have neck problems and it causes me mild tightness in my chest and some numbness. If the spinal cord is impeded (cervical
myelopathy), it can also cause trouble walking. Scleroderma can do some weird stuff too as you know.