Neurologist thinks I may have ALS

[dragonlibra]

Thanks I will do all that. Neuro is ALS specialist. But in time with this neuro not more than 15 mins each of 2 appts.

 

[dragonlibra]

Everyone is different! And, I've learned the hard way that diagnosis is difficult...not just with ALS, but MS...and the list goes on. I'm an example of being misdiagnosed with MS! I thought I had it for seven years! I'm here for my husband, so enough about me! And, it is amazing to me that now I am dealing with ALS with him! Life isn't fair! But, keep pluggin away, asking questions, and praying. You are going to experts! And, I can tell you for a 2nd opinion, my husband goes to the ALS/MD Clinic in Oakland/Pittsburgh at the Kaufmann Building, UPMC, as listed above by Lobster (Thanks Lobster!). Dr. Lacomis is excellent. My husband and I feel very comfortable with him. He has an all day appointment coming up on the 23rd. We meet the "team"
for a complete exam/review... I can let you know then how it goes. God Bless you! You have my prayers!

You and your husband are in my prayers. We're fellow Pittsburghers. I want to go to upmc for 2nd opinion. How much time did Dr Lacomis & team spend working up your husband?

 

[mysticunicorn66]

My sis had two surgeries to clear up issues with stenosis ( a cervival laminectomy) and she also had a problem in her back as well that they also did a laminectomy on as well. Only after doing these surgeries and seeing the areas free and clear, as well as running EMGs, MRI's, Nerve conduction studies, checks for issues with equlibrium, brain scans (which I will will point out an odd thing about hers in a bit). The last tests they ran was a muscle biopsy, which ruled out other things that also could have been the problem.

My late father-in-law had ALS. My sister does too. The odd thing about both of their brain scans is that they both had whitish spots on their brain scans that the people who read them attributed to calcium build-ups. From what the neurologist told me, that this was what he thought they were, but that it was odd for someone as young as both were to have these at this age (both were (and are in their 50's). he told me that they usually don't see that until someone is well advanced in age. Anyway, for both of them, a muscle biopsy was done. Both were not officially diagnosed until they also presented with the speech and swallowing problems as well.

For the record, my father-in-law never had any issues with his back or neck (like stenosis). His ALS started in his left hand and arm ad progressed downward. His breathing, speech and swallowing was affected. He did have problems with his bowels, but not with his bladder. he never had any pain (other than from the muscle spasms initially). They put him on Rilutek, which got rid of them. He would get winded just trying to dress and was on an O2 concentrator because his o2 sats were down. He was walking with a walker until he died from a pulmonary embolism.

My sister's started out with her left foot, progressed to both legs, then left arm, and started affecting breathing and swallowing. She has chronic issues with constipation. She is no longer able to walk and can only move her arms a little, but they tire quickly. She can move her head a little. She is in pain a lot. She opted not to take the Rilutek because it was not covered by her health plan. She is on gabapentin and cyclobenzaprine for the pain, along with a fentanyl patch. Both have a history in the military and both spent time stationed in Germany.

Get a second opinion either in Pittsburgh or in Morgantown at a teaching hospital. They tend to have better diagnostic equipment, at least compared to our local hospital, they do. There is also an ALS Clinic at WVU Eye Institute, 3rd floor in Neurology Dept. Dr. Laurie Gutmann is in charge of it.

 

[dragonlibra]

I am so sorry to hear about sister and father.

Thanks for information & advice.

 

[rose]

I, too, agree that is its imperative to get answers you trust. Its a red flag for me, to have a doctors skip over established protocol, especially when it involves a diagnosis as serious as ALS.

If you're in McKeesport, you're also not that far from Cleveland Clinic. Its a straight shot and a pretty easy drive. Its another option.

Its hard to be in your situation. We understand. Good luck to you.

 

[dragonlibra]

Thanks Rose. Will keep in mind.

 

[sya15]

Hi..
Numbness and tingling are not a sign of ALS secondary to sensory.(ALS doesn't affect sensation) what were the MRI results. Your balance issues sound like ataxic gait( drunken walk) usually due to cerebellum problems. Get a second opinion!

 

[dragonlibra]

Hi..
Numbness and tingling are not a sign of ALS secondary to sensory.(ALS doesn't affect sensation) what were the MRI results. Your balance issues sound like ataxic gait( drunken walk) usually due to cerebellum problems. Get a second opinion!

I don't have latest results. First 2 in my OP. I thought numbness & tingling were not usual ALS. Seeing a neurosurgeon Thur. Neurologist gave me script for that. If I could cross my fingers I would.

 

[notme]

HI

I'm back to what I said. Please get a copy of your EMG report. You do have a right to it. There are specific things a neurosurgeon looks at in the neck MRIs to determine if it can be causing the problems.

Neurosurgeon was my FIRST stop because of a fall I'd had. He was the one that first suspected ALS because my MRI wasn't bad enough to account for the multiple levels of issues I have--arms and legs, etc.

Neurosurgeon won't touch you unless they are pretty sure they can 'fix' the issues. As others said--sensory issues aren't ALS--but they can be caused by multiple things--even B-12 deficiencies.

It seems like they aren't being forthcoming with results--and you have the right to them. Trfogey is correct--don't assume they are all linked issues; it's entirely possible they aren't.

Have they checked your lumbar spine at all to see if there is an issue there that are causing the bowel/bladder issues?

 

[dragonlibra]

Thanks. Been thinking I should get lumbar checked. Though I've mentioned neurologists seem to let go right over their head issues I had since mid-teens.

When was early teens I injured my lower back falling off a horse. Didn't tell parents cause I snuck out to ride. Just suffered through bad pain for a couple of weeks and inability to run w/o pain for maybe half a year. Gave me off and on problems rest of my life including pain when extended standing. Also would get numbness/tingling front of thighs for several weeks at a time esp right on occasion since late 20's. I did go to a neuro doc who dismissed at time. That interested 1st neurologist I went to Apr this yr who jumped on MS.

 

[dragonlibra]

Guess there is a slight ray of hope. Neurosurgeon does see some spinal narrowing. Though I'm having muscle biopsy next week.

Ran into my neurologist in hall. Chatted for a couple of minutes. He said he is thinking ALS based

 

[munecagirl22]

were your emgs normal? everyone says normal emgs mean no als... and numbness and tingly isnt als its sensory issue. BUt als based is better then als ... '

i have had numbenss and tingles every when i wake up since symtoms startd 6mont sometimes it will be all the way up sometimes just 3 fingers, or just the hands but never fails me my ncv was normal.. werid... maybe numbness and tingly can be hard to pinpoint like people say all symtoms maybe not realted to everything... i hope and pray you do not get an als diagnosis based anything..

 

[dragonlibra]

Getting resigned to fact I probably do have ALS. Ran into my neurologist in hospital hallway. Said he based diagnosed possible ALS on EMG done May of arm loss of upper & lower neurons & my worsening symptoms.

Saw neurosurgeon. Showed me on MRI cervical narrowing and possible nerve impingement but doesn't think enough to explain how bad my right hand has gotten.

Next week muscle biopsy. Following week EMG legs. If ALS I want a copy of my records & go for 2nd opinion ALS center locally. they also are doing Dex trial so something to check out.

thanks to all here I know what to ask.

 

[dragonlibra]

Ignore my post about 2 or 3 posts up. Typing on phone & somehow posted incomplete. Sorry.

 

[notme]

HI

Don't give up hope yet. There are other things that can cause severe atrophy in a hand and symptoms other places in the body. I pray they will find you another answer.

Take care