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Jayjmarc

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Aug 9, 2012
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Learn about ALS
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US
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Pa
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Irwin
I am a 41 year old Male. I have been battling something now for the last two years with the last six months getting worse. I have had every test done known to man. All tests except for EMGs come back negative. I have had three EMGs and maybe a fourth one next week by an ALS specialist in Pittsburgh. The second EMG showed issues in my arms and legs. The Doc at the time wrote a note on the EMG stating, if continued neurological symptoms persist then it is possible ALS/MND. I was seeing two Neuros who thought it was Parkinson's. I was taking amantadine, occasional sinemt and azilect until I was one of the first to have the newly FDA approved DAT scan done of my head to show it was not Parkinson's. Within the last six months I have been showing atrophy on my right side. I have also started experiencing the popping facs in my calfs but also through out my entire body, even in my feet. The strange thing is I am also cramping and experiencing extreme muscle stiffness with pain which I am not sure is a symptom of ALS.

I thought this was Lyme Des. but have had two blood test (with Quest) to show otherwise. I have been an avid Moutain Biker (20 years), lived in the Moutains for a few years and thought for sure this was the case. I have been told to send some blood to Igenex labs, who from what I understand, specialize in Lyme tests. Should I do this or am I wasting time. I will wait until I see the new Doctor next week who was referred to me by the Neuro thinking I had Parkinson's.

I am a mess and am even having a hard time typing this. I was in the hospital for several days last week due to not being able to breath. While I was there they took a chunk out of my thigh for a muscle biopsy. A resident did my third EMG and said my leg got worse from the last emg a year ago.

Any suggestions on how to approach the ALS specialist next week? Are there that many Lyme cases misdiagnosed as ALS as some of these sites state? I know you should not believe what you read on the internet. Thank you.
 
I know what you mean about the leg stiffness and pain. I didn't think pain was associated with ALS either. I've had both hips replaced so always just attribute any pain to that and it could be from limping around so much, my gait is terrible! Anyway, go for my first EMG tomorrow and hoping for good news.

All the best to you and good luck!
 
Jay, sorry about what you are experiencing. I would assume that the specialist will have all of your records from previous testing. As to how to approach the specialist, tell him/her you are hoping for a d x other than ALS/MND. Wait til results with specialist before jumping on the Lyme bandwagon.
 
Sorry about your husband. I will wait until later to look into the lyme disease. It just seems all of a sudden I am on a downward spiral and things are getting worse. At one point I believed I had Parkinson's but the meds never really helped and when my wife and I would attend support groups I never felt as though I fit in based on what I heard. I am still working and it is kicking my ass. For about 18 months I took the Parkinson's meds and just kept getting worse. Now here I am with atrophy in my right trap muscle, arm, thigh and calf I am concerned along with weakness and wanting to lean to my left when I walk. I have resorted to a Cain at home on several occasions. My employers know as of a few days ago and are very supportive (at least I think they are?).
 
I meant a "cane" at home. This darn iPad and it's auto complete! Plus I can't spell either so bad combination. Thank you for dealing with me.
 
You seem to have a good attitude, although I know it is terrible to have to wait on appointments and tests. I hope it is something treatable. In the meantime, hug your wife and do something fun this weekend!
 
post was moderated... anyway-

I know it's tough waiting. In the meantime, hug your wife and do something fun this weekend.
 
Hi Jay, Shakespeare said something like "Nothing is as good or as bad as thinking makes it" i believe this to be so, regardless of your diagnosis. PLEASE try not to get stressed, I understand what you are going through - and it is easier said than done... but try to do things that bring more peace, love and joy into your life - stress makes symptoms so much worse with any disease. All the best :)
 
Kenwood: I hear you with the pain. I had back surgery a few years ago and thought everything was a pinched nerve. A recent MRI, however, showed no pinched nerves. I have been taking Motrin 800 like PEZ. They should make a dispenser like PEZ for Motrin. Oh well, I am getting tired and wacked. Sorry. Good luck on your EMG and I hope you have a good outcome.

Brooksea: Great idea with the weekend. However, I will probably find myself working on Lego city with my 7 year old son who now is controlling have the living room. I can still hug my wife while I build the police station. I do try to keep up beat. I always have but sometimes it is tough. Today has been tough since I feel like my legs are removed from my body. It has been a tough one but one day at a time. Thanks for your kind comments.

Wings: Great Shakespeare quote. So true. I do stress out time from time and need to take it easy. However, It feels like the clock is going backwards while I wait in this "waiting room". Thanks for the motivation to hang in there.
 
Motrin and Norco like they're Pez..... LOL Feel like my legs are removed as well, EMG at 1 today so should have some more info, one way or the other, soon!
 
I know its hard to wait but just be straight forward with the specialist (is the specialist for ALS?). Lymes disease isn't uncommon here. When my husband saw the doctor that was the head of the ALS clinic he asked about the possibility of Lymes. At that time he had the results of 4 lymes tests, 3 negative, 1 positive bar however it isn't unusual to get a false positive hence at least the 2 tests. The specialist ordered having the tests done again and if there was a positive then a spinal tap - the only way if the disease was this far along to truely know. However, with the symptoms my husband showed and all tests and MRIs, she was definite, that he had ALS....if lymes existed he had ALS and lymes as well.
The next set of tests were negativea nd a seceond opinion didn't recommend the necessity of a spinal tap to see if there was lymes.
 
Sorry to hear all that you're going through. The waiting is tough. I, too, had the 'new' DAT scan to rule out Parkinson's. The ALS specialist may test a few more things. I had several lyme tests as you want to 'make sure'. Try to stay upbeat and enjoy today.
 
Just reading along... are emg's ever wrong? If there is 1 positive EMG test that "shows signs of ALS", is that a certain enough diagnosis?
 
10steps: I will still consider the Lyme but am really curious as to what the ALS specialist has to say. I did order a kit from Igenex and talked with my GP who said she would draw the blood and send it back. In the several years I have raced mountain bikes, hiked and lived in the Laural Mountains of PA I had so many bites, have squeezed ticks out of my skin, etc. I understand several do not carry the Lyme and I never had the classic rash but when I started having the joint pain, muscle stiffness, etc. I thought for sure it was Lyme.

The issue with me is I have presented this in an uncommon way? At least that is what I have been told. I have had Doctors tell me I am a "special case." Which, to be honest, pissed me off. Then, they went with Parkinsons and now I find I took drugs for the last 18 months I didn't need. I have finally found a few Docs I feel comfortable with and trust and hopefully we come to a conclusion. You name the test and I have had it done. Hopefully it is good news but I am ready to accept whatever it may be. I know how I feel and it is simply not good across the board. I will say though these flacs are driving me nuts. Thanks for the information.

mich5: Thanks. I am waiting sober tonight. I did start drinking a bit heavy recently which the next day made me feel horrible but it was a way (I know a bad one) to cope and wait. Thanks.

tmackenzie: It depends on who is doing the EMG. I had one specialist and two residents/students administer the test. So three total and all were not good. I am having a 4th one done next week with an ASL specialist. This one has me nervous. I am also waiting on muscle biopsy results.
 
Saw the ALS specialist today. Said he didn't want to do another EMG. Said he thinks 99% do not have ALS. He said he would do a follow up EMG in three months. I have flacs, atrophy and weakness but am good for now? My wife and I thought about the Mayo Clinic vs. AGH here in Pittsburgh but we will go with this Dos says for now. I, however, am thinking about the blood work for Igenex to check for the Lyme. God Bless.
 
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