Aa
general questions neuromuscular/ ALS
I am a 42 year old male with a long complicated medical history. I'll try to be concise.
For the last 15 or so years I have had pain and weakness in both hands as well as neck pain. 8 years ago I had Carpal Tunnel release surgery in right hand with little or no improvement (also have CT in left hand). Over the years I have been treated for Bursitis/Tendonitis in right shoulder and De Quairvains Tenvonosis(?) in both hands as well as CT in both hands. MRI's show Cervical Spondolisis from C-2 thru C-7. I have seen many Dr's, Orthopedic, Neurologist, Neurosurgeons
About 2 1/2 years ago a Neurologist told me she thought I had ALS. I do have many of the symptoms- twitching, hyperreflexia in right arm, abnormal emg. I also have many symtoms that dont match up.I dont believe the Dr. ever read my medical history. She is a ALS/MND Specialist
Here is a list of my symptoms:
1) Chronic headaches- Feel Pressure related
2) Chronic Neck Pain.
3) Pins and Needles feeling in both arms and legs
4)Weakness and muscle atrophy in right hand
5)Twitching- mostly in upper part of body. Also in face and frequently in bladder.
6) Tremors in right hand
7) Frequent Urination- 30x's plus. Urologist says Prostate is fine. May be neurological
Medical History:
1) Bi-Lateral Carpal Tunnel confirmed by EMG's
2) Possible Ulnar Neuropathy indicated on one EMG. Muscle atrophy in hand corrisponds to Ulnar nerve
3) Cervical Spondolysis- C2 thru C7. MRI's dont show conclusive evidence of nerves being crushed.
No surgery recommended.
4) Stable brain lesion on Posterior Fossa. Probably lipoma
Regarding ALS/MND, most Dr's including original Neurologist ruled it out, but Specialist is stick to her guns. I am listing indications as well as contra-indications:
ALS/MND Indications:
1)Weakness in right hand. (rest of right arm is still strong)
2) Twitching
3) Hyperreflexia in right arm
4) Abnormal EMG's (side note- first abnormal emg of right arm was 14 yrs. ago. Last 2 emgs have been the same except for right hand which is slightly worse. Emgs were done 2 years ago and 1 year ago.
ALS/MND Conta-indications:
1) Wide-Spread pain and pins & needles feelings. Would indicate sensory involvement.
2) Medical History. See above
3) Bladder involvement. If proved to be neurological.
4)Weight gain- Have gained 30 lbs. since be told of ALS/MND possibility
Sorry for this long, confusing post. I realize I cannot be diagnosed over the internet. I guess I'm looking for help in getting to the bottom of what is going on. It seems that the Dr's I see get bogged down on the ALS/MND issue (again all but 1 rule it out) and then the appointment is over and I leave with more questions and very few if any answers. Any guidence would be appreiciated
For the last 15 or so years I have had pain and weakness in both hands as well as neck pain. 8 years ago I had Carpal Tunnel release surgery in right hand with little or no improvement (also have CT in left hand). Over the years I have been treated for Bursitis/Tendonitis in right shoulder and De Quairvains Tenvonosis(?) in both hands as well as CT in both hands. MRI's show Cervical Spondolisis from C-2 thru C-7. I have seen many Dr's, Orthopedic, Neurologist, Neurosurgeons
About 2 1/2 years ago a Neurologist told me she thought I had ALS. I do have many of the symptoms- twitching, hyperreflexia in right arm, abnormal emg. I also have many symtoms that dont match up.I dont believe the Dr. ever read my medical history. She is a ALS/MND Specialist
Here is a list of my symptoms:
1) Chronic headaches- Feel Pressure related
2) Chronic Neck Pain.
3) Pins and Needles feeling in both arms and legs
4)Weakness and muscle atrophy in right hand
5)Twitching- mostly in upper part of body. Also in face and frequently in bladder.
6) Tremors in right hand
7) Frequent Urination- 30x's plus. Urologist says Prostate is fine. May be neurological
Medical History:
1) Bi-Lateral Carpal Tunnel confirmed by EMG's
2) Possible Ulnar Neuropathy indicated on one EMG. Muscle atrophy in hand corrisponds to Ulnar nerve
3) Cervical Spondolysis- C2 thru C7. MRI's dont show conclusive evidence of nerves being crushed.
No surgery recommended.
4) Stable brain lesion on Posterior Fossa. Probably lipoma
Regarding ALS/MND, most Dr's including original Neurologist ruled it out, but Specialist is stick to her guns. I am listing indications as well as contra-indications:
ALS/MND Indications:
1)Weakness in right hand. (rest of right arm is still strong)
2) Twitching
3) Hyperreflexia in right arm
4) Abnormal EMG's (side note- first abnormal emg of right arm was 14 yrs. ago. Last 2 emgs have been the same except for right hand which is slightly worse. Emgs were done 2 years ago and 1 year ago.
ALS/MND Conta-indications:
1) Wide-Spread pain and pins & needles feelings. Would indicate sensory involvement.
2) Medical History. See above
3) Bladder involvement. If proved to be neurological.
4)Weight gain- Have gained 30 lbs. since be told of ALS/MND possibility
Sorry for this long, confusing post. I realize I cannot be diagnosed over the internet. I guess I'm looking for help in getting to the bottom of what is going on. It seems that the Dr's I see get bogged down on the ALS/MND issue (again all but 1 rule it out) and then the appointment is over and I leave with more questions and very few if any answers. Any guidence would be appreiciated
Having trouble posting this?
Had another appt. with specialist. Seems like me vs. them.
Does the following seem correct to those who know or have been thru this:
Was told:
-Sensory involvement is not uncommon in ALS.
-Weight gain not uncommon. Will lose weight when I can no longer swallow (I am having no difficulty with this)
-This is ALS until proven otherwise. This seems to go against normal procedures of ALS diagnosis
Had another appt. with specialist. Seems like me vs. them.
Does the following seem correct to those who know or have been thru this:
Was told:
-Sensory involvement is not uncommon in ALS.
-Weight gain not uncommon. Will lose weight when I can no longer swallow (I am having no difficulty with this)
-This is ALS until proven otherwise. This seems to go against normal procedures of ALS diagnosis
Just a word of advice - NEVER give a new specialist a time line as per your posting here above - biggest mistake all patients make when they see a new Dr is they pour out all the information from what previous drs have or haven't said - this is just wasting your time and money and quite frankly making this Drs job so very easy. When you see your new Dr - yes they always ask for history - only disclose the most important information, if applicable to you, such as cancers, heart disease - and symptoms that are bothering you in the present. Let them then use their expertise that they are supposed to have and work for their money to find your diagnosis.
This way you are guaranteed a diagnosis.
This way you are guaranteed a diagnosis.
On a specific note: has anyone heard of someone gaining weight with ALS? I've gained over 30lbs in the 2 1/2 years since the Dr. told me she thought I had ALS. Cant explain it. I've been told this is almost impossible.
Hi Trish,
Thanks for the response.
I agree there is something going on in the neck and spine. Have chronic neck pain and odd sensations in c-spine what feels like what we called in football a "Stinger". The MRI's show degenerative disks but Neurologists ans Neurosurgeons see no specific inpingement in specific nerves. Wondering if there could be something that would not show up on MRI that may be effecting nerves like infection.
None of DR.'s I've seen have looked at entire medical history & read my detailed notes. They just cut me off about 5 miniutes in and do tests they are interested in. Been going on for years. Driving me (and by extension family) crazy.
Thinking of going to a Medicine Man or Witch Doctor. They could'nt be less helpful than who I've seen so far
Thanks for responding
Thanks for the response.
I agree there is something going on in the neck and spine. Have chronic neck pain and odd sensations in c-spine what feels like what we called in football a "Stinger". The MRI's show degenerative disks but Neurologists ans Neurosurgeons see no specific inpingement in specific nerves. Wondering if there could be something that would not show up on MRI that may be effecting nerves like infection.
None of DR.'s I've seen have looked at entire medical history & read my detailed notes. They just cut me off about 5 miniutes in and do tests they are interested in. Been going on for years. Driving me (and by extension family) crazy.
Thinking of going to a Medicine Man or Witch Doctor. They could'nt be less helpful than who I've seen so far
Thanks for responding
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