confusing,conflicting,multiple Dx,s

[rrg1953]

let me start by saying hello ,ive spent time reading on this forum before i had the nerve to write, i shouldnt have waited as there are so many caring and down to earth people on this forum,thank you all fot what you are doing.

well,i am a 55yr old male who has recently got an ALS Dx back in may 08,after having a Dx of parinsonisim for appx 2 years or more ,appx dec 06 with symptoms starting back as early as dec 05 resulting in misdiagnosis,conflicting Dx,multiple Dx,as i went for more tests and opinions,my neurologit who sent me to another specialist after almost 2 yrs confirmed that it was ALS after an emg and ncv test another specialist and movement disorder neurologist thats its not ALS,its parkinsons after another emg and ncv test.so you cab see thatits overwhelming and very stressfull. i can stillwalk,drive,function ok,move slower,take small stepsin tightplaces,lose balance sometimes,have speech and swallowing problems,constipation,stiffness in neck,muscleloss in upper torso which was also confirmed as resulting from radiation therapy i had backin 1983 for hogkins lmphomia.whichhas caused droped head sligtly,in the last 3years,taking phs therapy again for that along with keepingup strength.so im doing the best i cannot working anymore,im on ssdi,but i have to tell you itsthe not knowing that makes it worse.why is itso hard to pinpoint andget the correct Dx,you would think if it was ALS that after all these years would be more progressed,so maybe its parkinsons, who and what would you believe.dont know

 

[BethU]

Wow, you have really been through the mill. I don't know enough about medicine to offer any insight into your symptoms, but it seems to me that you need to get someone to make a definite diagnosed. If it is ALS, there is medication that can slow the disease, and if it is Parkinson's, there are meds that can help. So it's important that they make up their mind so you can get appropriate care.

Have you been to a university hospital? That might be your best bet, to get evaluated by doctors who see a lot of patients with both diseases. It is possible for ALS to progress very slowly, but if your symptoms started in 2005, that seems very slow indeed.

I agree with you ... it is the not knowing that will drive you crazy. It is EXTREMELY stressful to get all these conflicting diagnoses. Nobody should have to go through this.

I'm not much help, but I will keep you in my prayers and hope you get the right answer soon.

BethU

 

[rrg1953]

let me start by saying hello ,ive spent time reading on this forum before i had the nerve to write, i shouldnt have waited as there are so many caring and down to earth people on this forum,thank you all fot what you are doing.

well,i am a 55yr old male who has recently got an ALS Dx back in may 08,after having a Dx of parinsonisim for appx 2 years or more ,appx dec 06 with symptoms starting back as early as dec 05 resulting in misdiagnosis,conflicting Dx,multiple Dx,as i went for more tests and opinions,my neurologit who sent me to another specialist after almost 2 yrs confirmed that it was ALS after an emg and ncv test ,went to see another specialist and movement disorder neurologist ,they both said thats its not ALS,its parkinsons after another emg and ncv test.so you can see that its overwhelming and very stressfull. i can still walk for 2-3 miles at a time ,drive,function ok,move slower,take small steps in tight places,lose balance sometimes, slurred speech,voice coarse and weakened ,muscle loss in neck,shoulders upper torso which was also confirmed as resulting from radiation therapy i had back in 1983 for hodgkins lymphomia.which supposedly has caused droped head sligtly,in the last 3 years,taking phys therapy again for that along with keeping up strength.so im doing the best i can .im not working anymore,no one will hire me anyway so im on ssdi,but i have to tell you its the not knowing that makes it worse.why is it so hard to pinpoint and get the correct Dx,you would think if it was ALS that after all these years would be more progressed,so maybe its parkinsons, who and what would you believe.dont know

forgot to mention the recent may 08 Dx of ALS was with bulbar onset if that helps

 

[rrg1953]

Wow, you have really been through the mill. I don't know enough about medicine to offer any insight into your symptoms, but it seems to me that you need to get someone to make a definite diagnosed. If it is ALS, there is medication that can slow the disease, and if it is Parkinson's, there are meds that can help. So it's important that they make up their mind so you can get appropriate care.

Have you been to a university hospital? That might be your best bet, to get evaluated by doctors who see a lot of patients with both diseases. It is possible for ALS to progress very slowly, but if your symptoms started in 2005, that seems very slow indeed.

I agree with you ... it is the not knowing that will drive you crazy. It is EXTREMELY stressful to get all these conflicting diagnoses. Nobody should have to go through this.

I'm not much help, but I will keep you in my prayers and hope you get the right answer soon
BethU

thanks,went to westchester medical for second opinions and emg/ncv retesting which if you know about that place its one of the top/best in the area ,also just had a recent mri of spine and brain which said was normal also have been on parkinsions meds for awhile too,figure i would add that too if it makes a diference

 

[crystalkk]

What was the diagnosed that you received from weschester medical?

Do you no what the results of your emg were?

Have you been to an ALS specialist?

 

[gbrown]

I went through a lot of what you are going through before my final diagnosed. of ALS, it is just part of the process. I started having symptoms in 01', was diagnosed with diabetic neuropathy in 02', had an EMG by local neuro in 03', still diagnosed with dia/neuropathy. I went to a physical therapy neuro in 05', did a month of PT and OT. He said it could be MD, MS, or Parkinsons, but he would lean toward ALS. I went back to local neuro in early 05' and had another EMG. She then admitted she did not know what it was and sent me to Dr. James Caress at the Wake Forest Baptist Medical Center in Winston Salem, NC. Dr. Caress is considered to be one of the top ALS neuros in the country and runs an ALS clinic which I attend. On July 16,06' he finally diagnosed me with ALS.

That is just par for the course for this damnable disease. Most neuro's who do not specialize in AL S don't know how to diagnosed' it. So, it is better to go to one of the university ALS clinics and people who are very familar with this disease.

Hope this helps some, although the waiting is hell.
Gordon

 

[BethU]

What were the symptoms you presented with in Dec. 05? Do you have any tremors? Do you have any breathing problems?

It is my understanding (but I do not know this for sure) that there have to be tremors present for a diagnosed of Parkinson's, and tremors are NOT characteristic of ALS.

ALS can be very slow progressing. My bulbar symptoms started March 06, and I am stlil walking (although not 2-3 miles!) driving, etc., but with some limb weakness. Others on this forum have gone many years longer with both limb and bulbar onset.

It seems that these two conditions are far enough apart that there shouldn't be this diagnosed confusion.

Hang in there,
BethU

 

[lydia]

tremors with Parkinsons'

Hello,

One of the possibilities in my original differential was Early/Young Onset Parkinson's. I was reading alot and saw repeatedly that a small percentage of these patients (around 10%, I think) never develop a tremor (and that they seem to have a rougher time with the disease compared to other young onsets who do have tremor....).

Lydia

 

[rrg1953]

What was the diagnosed that you received from weschester medical?

Do you no what the results of your emg were?

Have you been to an ALS specialist?

they(westchster med)said its parkinsons
dont have the numbers or graph in front of me.i can get it from them ,but the results was non -concluosive to support the first emg saying it was ALS
no,,trying to get out oif network plan coverage thru my wifes insurance to get to columbia or mt sinai or beth israel ,all in nyc

 

[rrg1953]

What were the symptoms you presented with in Dec. 05? Do you have any tremors? Do you have any breathing problems?

It is my understanding (but I do not know this for sure) that there have to be tremors present for a diagnosed of Parkinson's, and tremors are NOT characteristic of ALS.

ALS can be very slow progressing. My bulbar symptoms started March 06, and I am stlil walking (although not 2-3 miles!) driving, etc., but with some limb weakness. Others on this forum have gone many years longer with both limb and bulbar onset.

It seems that these two conditions are far enough apart that there shouldn't be this diagnosed confusion.

Hang in there,
BethU

no tremors,no breathing problems ,first symptoms were speech slurring ,thoughtt was stroke,along with weakeningneck muscles after that

 

[rrg1953]

What were the symptoms you presented with in Dec. 05? Do you have any tremors? Do you have any breathing problems?

It is my understanding (but I do not know this for sure) that there have to be tremors present for a diagnosed of Parkinson's, and tremors are NOT characteristic of ALS.

ALS can be very slow progressing. My bulbar symptoms started March 06, and I am stlil walking (although not 2-3 miles!) driving, etc., but with some limb weakness. Others on this forum have gone many years longer with both limb and bulbar onset.

It seems that these two conditions are far enough apart that there shouldn't be this diagnosed confusion.

Hang in there,
BethU

you would think so,even with muscle weakness in arms and weight loss /wasting atrophy in neck,shoulders, upper torso .the neurologist at westchester medical said that if it was ALS it would have been more advanced by nowand she was 100% sure it wasnt ALS.i think its time to see an ALS specialist

 

[rrg1953]

I went through a lot of what you are going through before my final diagnosed. of ALS, it is just part of the process. I started having symptoms in 01', was diagnosed with diabetic neuropathy in 02', had an EMG by local neuro in 03', still diagnosed with dia/neuropathy. I went to a physical therapy neuro in 05', did a month of PT and OT. He said it could be MD, MS, or Parkinsons, but he would lean toward ALS. I went back to local neuro in early 05' and had another EMG. She then admitted she did not know what it was and sent me to Dr. James Caress at the Wake Forest Baptist Medical Center in Winston Salem, NC. Dr. Caress is considered to be one of the top ALS neuros in the country and runs an ALS clinic which I attend. On July 16,06' he finally diagnosed me with ALS.

That is just par for the course for this damnable disease. Most neuro's who do not specialize in AL S don't know how to diagnosed' it. So, it is better to go to one of the university ALS clinics and people who are very familar with this disease.

Hope this helps some, although the waiting is hell.
Gordon

thanks for the reply

 

[BethU]

the neurologist at westchester medical said that if it was ALS it would have been more advanced by nowand she was 100% sure it wasnt ALS.i think its time to see an ALS specialist

I hate to say this, but that is almost exactly what my Neuro #3 told me when he diagnosed me with MG last January (21 months after symptoms started). He said, "It can't be bulbar onset ALS, because if it were, you'd be 6 feet under by now."

That goes on the top of my list of the most offensive, insensitive, idiotic statements I've heard from a doctor. And of course, 5 months later when I was diagnosed with ALS, that's the first thing I thought of ... OMG, I'm going to die any minute.

Wrong! I have had a slow progression so far and I intend to be hanging around a while longer.

What especially bugs me is that he was a consulting neuro with a group of residents with him, and now they will all go into private practice thinking that I had the "wrong kind of tongue fasciculations" (that's what he also said) for ALS, and they will also believe that you can diagnosed MG or ALS without doing any tests. And so down the line as those residents set up their own practices, more and more patients will get mis-diagnosed because of that idiot.

I'm so glad you are going to see an ALS specialist. There are so many mimic diseases, and so many possibilities to consider, you need to get a firm answer and put all this guessing behind you. To me, it doesn't sound like ALS, but that doesn't mean anything.

I have learned that it is easier to deal with a terrible diagnosed than it is to keep going on and on and on without an answer. Hang in there. I'm hoping you get the answer soon, and that it will be a good one.

BethU
P.S. My diagnoses have been stroke, PSP, MG, and ALS.

 

[SavoringLife]

Wow...your case sounds very similar to my husband's. I'm so sorry that you are going through this -- we understand completely the frustration. My husband is 43, presented with weakness in upper extremities, neck flexion weakness, hoarse voice and difficulty swallowing. But, his legs are strong and he still has full fine motor skills in his hands. Walks, bikes, rides his motorcycle, works, etc. This has been going on for almost 2 years. We also have received different diagnosis, including MND most prevalently.

We are now at Columbia University's neuromuscular clinic -- started the evaluation process on 8/29 and still going through lots of testing (just today had a spinal tap.) Unfortunately, they are repeating many of the same tests already done by other neuros -- now have had 4 EMG's, 4 MRI's, etc. This is frustrating for my husband, but on the other hand, we are pleased that Columbia is pursuing every diagnostic tool and avenue available to them. I read in your post that you are trying to get out-of-network approval to go to Columbia. We hope you can get this -- they have given us confidence and hope that they will figure out what is going on. Be prepared, though, it takes awhile to get an appt., and then the process can be lengthy. Good luck -- please keep us posted on your progress and we will do the same.

 

[rrg1953]

Wow...your case sounds very similar to my husband's. I'm so sorry that you are going through this -- we understand completely the frustration. My husband is 43, presented with weakness in upper extremities, neck flexion weakness, hoarse voice and difficulty swallowing. But, his legs are strong and he still has full fine motor skills in his hands. Walks, bikes, rides his motorcycle, works, etc. This has been going on for almost 2 years. We also have received different diagnosis, including MND most prevalently.

We are now at Columbia University's neuromuscular clinic -- started the evaluation process on 8/29 and still going through lots of testing (just today had a spinal tap.) Unfortunately, they are repeating many of the same tests already done by other neuros -- now have had 4 EMG's, 4 MRI's, etc. This is frustrating for my husband, but on the other hand, we are pleased that Columbia is pursuing every diagnostic tool and avenue available to them. I read in your post that you are trying to get out-of-network approval to go to Columbia. We hope you can get this -- they have given us confidence and hope that they will figure out what is going on. Be prepared, though, it takes awhile to get an appt., and then the process can be lengthy. Good luck -- please keep us posted on your progress and we will do the same.

sound slike exactly wjat im going through and are experienceing /i wass working at thesame job for 31 years untill they closed ,so i retrained,got my cdl license appx 1 1/2 years ago.but didnt have much of a chance with the symptoms so obvious. also still ride a mc,but its one with a sidecar,mainly for the balance /weight at stops,its been fun actually ,hope to continue next season,thank you for your reply, info and well wishes.