waiting and wondering. ALS?

[telepink]

My husband started having muscle cramps all over his body over a year ago. Mostly his legs, feet, hands, and abd. He started having a strange gait in one foot. Later (about 8 mo ago) we noticed a foot drop. This has gotten worse over the time. He has muscle twitching all over his body, almost constantly. He started feeling just all over weak, but esp in one leg. He has had numerous falls. He has to be very careful walking. He says his foot and ankle and leg just dont seem to work right. He went to family physician 6 weeks ago, who did a ck blood test which showed elevated protein levels. Sent him to an neurologist, but the wait was over a month. In the mean time he went ahead and saw an ortho dr. who ordered an MRI and did a series of strength tests. He showed very much weakness in his left foot and leg, and not so much in his right leg. He has noticable muscle atrophy in his left calf. After looking at the MRI the ortho dr. told him he had a little bit of a bulging disc L4 and L5, but that he was certain this was not causing these symptoms. In fact he told my husband that his symptoms were "ominous" and got him in to see the neurologist the next week.
The neurologist did some nerve conduction tests on his left leg and foot, and ordered extensive blood work abt a month ago. So far all of the blood tests have come back normal. He had him come back in for more nerve testing. At this time they tested his right leg arms and hands. The tech that did the nerve testing called last week saying that the results were not completely consistent, (I think is the word she used) with ALS, and that it seemed more like a spine problem. We dont know if this is the opinion of the tech or the dr. He is scheduled to have a skin biopsy next monday. He has only seen the neurologist one time and is getting bothered by the lack of communication with this dr.
After spending hours online, we cannot find any info that shows a bulging disc would cause all of these symptoms. All of the symptoms keep pointing to ALS. We are very anxious.
Any opinions?

 

[Moonmark]

Hi Telepink-

sorry to hear of your husband's problems. did your husband have an EMG done or just the nerve conduction (NCV) study? The NCV is normal in the case of ALS, but the EMG is abnormal. If he has problems on the nerve conduction part of the test, you are probably dealing with something other than ALS. I am not a medical professional, but that is what I have been able to glean from my reading here and also from the neuro that I saw for a nine month history of muscle weakness, stiffness, twitching and other problems. No diagnosis of anything for me yet.

I think there was someone on here whose husband was initially diagnosed with ALS, but who actually had a spinal cord problem related to an injury. Both she and her husband had to do extensive advocating for themselves with the neuros before they would conduct additional testing and ultimately, do surgery. I can't remember her name, but others on here would know.

in any case, it takes some time to diagnose ALS, as all other illnesses causing similar symptoms have to be ruled out. are you seeing a specialist in ALS and related neuromuscular diseases? If not, that is the way to go, preferably at a well regarded hospital. apparently local neurologists do not see enough of the disease and are not adequately skilled in the administration and interpretation of the EMG test to accurately make this diagnosis.

I hope they find something treatable for your husband.

Good luck--

Sandra

 

[telepink]

Thank you Sandra. This must have just been the NCV. I was with him and they did not insert any needles into his skin like I read the EMG is done. We have not gone to a specialist yet. My husband is sure he does not have ALS now because of what the tech told him. I am not so sure. I am pretty sure some of his symptoms have gone one for way more than a year, but only in the last 6 weeks has he seen any kind of a dr.
You do not have a diagnosis after seeing a neuro for 9 months? Is this common?

 

[telepink]

I forgot to say that my husband is 51 yrs old. Very physical and in good shape up until lately. He has lost 20 lbs in the last 6 months and has not been dieting. His appetite is normal. No other health problems.

 

[Moonmark]

Hi Telepink-

No, I do not have a diagnosis. I have seen two neurologists who are specialists in ALS, one said no ALS "at this time" in July; the other said "unlikely," but they both said they cannot definitively rule out a neuro condition and I will go back every 3-6 months. The last visit showed some changes in my reflexes, but for the most part, my condition is not dramatically worse, so it's a wait and see approach for me. I had a normal EMG in June of two legs and one arm. they do not want to repeat the EMG until this summer, apparently, unless things significantly worsen before then. I last saw a physician's assistant in the neuro's office before Christmas and he said some neurological conditions take a while to diagnose, which is a refrain I keep hearing. he also mentioned the possibility of an atypical form of MS, but I do not have a lot of sensory symptoms, with the exception of off and on again numbness in hands after waking up. I very well may not have ALS, but I do have something chronic going on. it remains a mystery.

I have read that some people are diagnosed rather quickly with ALS, while others take a year or longer to be diagnosed. I read an article recently about a woman who was ultimately diagnosed with ALS after four years of slowly worsening symptoms. I imagine that is the exception, not the rule, though. But again, I am not a doctor!

There are a number of undiagnosed, but unwell people on here who have had troubling problems for some time, but no diagnosis. some just stop posting after a while, while others continue to visit. I am by no means convinced I have ALS, but I do have something wrong with me and there's no where else for me to go with my complaints! and people seem willing to listen and offer advice. If a year goes by and the EMG still is negative, then I am assuming I'm in the all-clear, at least for this particular illness.

anyway, I do hope your husband gets some answers soon. It is really frustrating and draining to not know what is going on.

take care--

Sandra

 

[telepink]

Sandra, I hope you can get some kind of diagnosis soon and I hope it is not ALS.

 

[laurel]

Hi Telepink,
Don't rule out other things yet. My husband had weakness and atrophy of his right hand and forearm, footdrop in this right foot, general malaise, some muscle cramping, some fasciculations. Original neurologist diagnosed carpal tunnel and he had failed surgery on the recommendations of that neurologist . He eventually went to a neuromuscular disorder clinic. The neuromuscular neurologist did query ALS and CIDP. He was given IVIG and responded to that well. So in the end he was diagnosed with CIDP and he receives monthly IVIG. He will never regain full use of his right hand due to the damage done while getting a proper diagnosis and his right foot is weak and slaps when walking. But the IVIG has prevented further damage. I would strongly encourage that your husband see a neurologist specializing in neuromuscular diseases. We didn't question the first neurologist and spent almost 2 years before getting a proper referral. At the specialist he had lumbar puncture, blood work sent Athena Labs looks for autoimmune diseases, EMG, and nerve conduction tests plus the general physical testing that neuro's do. Even after the EMG and nerve conduction tests, he still had the query of ALS for a few months until he responded to IVIG so I think that indicates the difficulty sometimes in interpreting these tests. Good luck and keep us posted on how things go.
Laurel

 

[telepink]

Laurel,
thanks for the reply. I have never heard of CIDP.
I just did some reading on it though. I'm sorry your husband has permanent damage. I hope he continues responding well to treatment. My husband will have the skin biopsy monday and at that time we will ask for a recommendation for a specialist.
May I ask how old your husband is?
Good luck to the both of you.

 

[laurel]

Hi Telepink,
My husband is 62 now. Problems were first noticed in his mid-50's. He is a retired airline pilot and first noticed weakness in his right hand when moving toggle switches when flying. He took early retirement because he just didn't feel well--at that time he didn't know he had a major issue going on. Sounds like they are still looking for neuropathies with your husband since they are doing the skin biopsy. So that is good. Thank you for your good wishes. Good luck on Monday.
Laurel

 

[Zaphoon]

I understand the anxiety that accompanies being in Limbo Land regarding a diagnosis but Limbo Land, for the time being, can be regarded as a safe place. I'm sure you've heard the expression, "Ignorance is bliss". While there is anxiety at the present, you still do not have ALS at this point.

This is a good time to consider the mountain of alternate possibilities. Your husband could still yet be diagnosed with something that is fixable (or at least treatable).

I wish you the best possible!

Zaphoon

 

[telepink]

Zaphoon thank you for the words of wisdom and encouragement.

I'm curious if anyone has an opinion. I know no one here can diagnose, but from these symptoms, doesn't this sound like ALS? I don't fnd any info showing that these symptoms support a bulging disc. If my husband only had one or two ALS symptoms I would prob never have even thought of ALS, but he has so many of them.
He's had them for a while but we just recently started putting them together.

 

[Danijela]

Hello and welcome to the forum.

I think you are going down the correct route with testing, having the correct tests done, which is a positive thing. My advice is to have a neurologist who specialises in ALS read NCV/EMG findings as well as conduct a physical examination. My partner had one 'inconclusive' NCV/EMG test (plus weakness, twitching and hand/arm atrophy), and a number of blood tests to exclude other possible conditions. After the second NCV/EMG test, a couple of months later, he was given an ALS diagnosis, by a neurologist who specialises in ALS.

Waiting for a diagnosis is very difficult, but things are often not straight forward, and ALS is not a diagnosis that any reputable neurologist will give lightly. Wishing you all the best, and hope it turns out to be something else.

Dani

 

[telepink]

Thank you so much for your reply Dani.

 

[telepink]

My husband finally got the results of the skin/nerve biopsy back. I was normal. What does this mean in diagnosing als?

 

[Madison1943]

I had back pain before my toes started cramping every night for a few weeks in June 2008. I had an MRI that showed several bulging disks and arthritis. I was all excited because the falls and cramping might be from the back. No such luck. ALS always gets worse, so the falls continued, walking became really difficult, it moved into my speech and breathing within the space of 2 years. If your symptoms stay the same or come and go, it's probably something else. You're lucky!

Thanks,
Carol