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Jamiet

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I'm not trying give anyone false hope here, only posting what i find to be real, geniune stroies, i've spoken to two of these personnaly. Pay close attention to who wrote the thread, you will see a chain of progress from a few people.

For those of us, who are in unknown land (Normal EMG, NO ALS diagnosed and they don't know what the heck is up with us).....Here is a good explanation:

Author Topic: any other ALS diagnosis?
canadianmike
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posted November 30, 2006 10:31 PM
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Hi all,

I'm wondering if there's anyone else on here who was originally diagnosed with ALS but is now being treated for lyme? This was the case for me and I've been lurking on here hoping to find others. I see we are few.

I'm being treated by Dr.B with mild success, but the improvements i've noticed haven't impacted my everyday activities.

Diagnosed with ALS Nov. 04, diagnosed with lyme Jan, 06 even though Igenex test was IND.

Started on three months of tetra and noticed improvements in joint pain, headaches, fatigue, and strength. Switched to Amoxy and didn't notice anything else for four months. I am now on Mepron / Azythro for the past three weeks and have noticed improvements in twitching and sweaty palms.

I haven't noticed any improvements in motor function and I'm wondering if there's anyone out there that can offer me a little encouragement with your experiences.

I'm hoping to be able to rebuild some muscle and
I'm wondering what has helped others in my situation. Thanks in advance.

David95928

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Mike, I can't comment directly but noticed yesterday tht there is a section in the newbie links on Lyme and als.

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David



lymie tony z
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posted December 01, 2006 07:21 AM
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Hi Mike,

While I was never officially diagnosed with als my first appointment with an ID duck came back with a letter to my PCP at the time that I "might have ALS" among other things.

This idiot duck also said...he did'nt trust Igenex lab results.
He told me "I don't think you have lyme disease, but I'll treat you for lyme arthritis".
Now how stupid is that!?

I suggest that if you can get into a hot tub or sauna while you're on abx. This external cellular hyperthermia may help the abx get to critical areas imbedded in your cns and muscles etc.


I was IGG positive with five bands. Which was good enough for the CDC who I had to report to but not good enough for this Idiot duck!

I also suggest getting your hands on a tens unit...it's an electric muscular stimulator.

I believe mine helped to re-awaken muscles and more imortantly nerves in areas that were affected by the lyme dissemination....who knows maybe it even fried a few of the little buggers.

If you dumn duck won't give you one...you can go to one of those television channels that sells stuff and get DR. HO's machine....IT's not as good but will suffice.

zman


Troup Brazelton
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posted December 01, 2006 09:15 AM
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Mike

The way my LLMD explained the recovery of motor functions in lyme cases was that the neurotoxin had interupted the information flow. It only takes a small amount and can stay in place for an unknown time frame. But, as those people that take botox for various problems know, the body will seek out and remove toxins. Botox is usually gone within a year and a new shot is required.

The trick is to kill the lyme to stop the production of neruotoxins so whatever time frame your body uses to rid itself of toxins, it will eventual do so.
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richtersl
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posted December 01, 2006 11:18 AM
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Hi Mike,

Welcome to Lymenet. I'm sorry you're not doing well.

I don't have any experience directly with Lyme and ALS other than I recommended a co-worker's friend with ALS see an LLMD.

This co-worker's friend was being treated for ALS and doing very poorly. According to his friend the guy could barely move and had given up.

The co-worker had told me about him a year ago and I gave him the number of an LLMD, told him that Lyme is often misdiagnosed as ALS, and that his friend should seek a second opinion from this LLMD. Well, the ducks this guy was seeing convinced him that there's NO WAY he had Lyme so he never called.

Come this past August the fellow is now dying and the ducks had given him two months to live. The co-worker had told him about the CD-57 test and said that he could request that test from the hospital where he was at. The ducks first refused, then took a blood sample for the test. They never told him the results, even after repeated requests.

Out of desperation the co-worker asks me again from the LLMD's number. I gave it to him and told him to stress to the guy's wife to call that number ASAP.

To make a long story short, the wife followed up on this and he saw the LLMD. A Lyme test was given and he was put on antibiotics. Within two weeks he had energy to walk around again and was starting to put weight back on. From what I understand, folks with ALS do not gain weight.

This fellow tested positive for Lyme on the CD-57 test.

Though he still has a ways to go, he is now getting his life back and is at least moving in the right direction.

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Linda

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SForsgren
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posted December 01, 2006 11:21 AM
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There was a doctor that presented at the ILADS conference in October that had ALS himself and was later diagnosed with Lyme. Started on Rocpehin and had a remarkable recovery including of some motor function, etc. Was so pleased with his results that he started a clinic aimed at people that have ALS and overall, the results have been promising. If you want more specifics, I can probably find them. PM me or email me through my site. Be well

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In Better Health, Scott
You can reach me through my articles at www.PublicHealthAlert.org

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Lymetoo
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posted December 01, 2006 11:30 AM
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Wow, Linda! What a story!

Welcome Mike! I do have these links on ALS and Lyme.

ALS/LYME
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic&f=1&t=037392#000021
http://home.goulburn.net.au/~shack/lyme.htm



cave76
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posted December 01, 2006 12:28 PM
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This is an interesting topic for me since I've been in contact with a man diagnosed with ALS plus Lyme.

However, so far he's not had a positive response to the Rocephin IV. Of course, we're all hoping for some improvement.

One little point, Linda, and I'm only saying this so any newbie won't get the wrong impression: You said:

***This fellow tested positive for Lyme on the CD-57 test.***

That test can not tell if a person is positive for Lyme or not. It's a test that was devised by an llmd to see if there's any correlation between the "numbers" and the disease progression.

So far, it's not been able to definitively 'prove' a direct relationship. But it certainly has some bearing--- which will hopefully found in the future.

See http://www.anapsid.org/lyme/strickerpanel.html

Newbies: it's not a test to see if you have Lyme disease or not. It may be useful in the future to track the disease progression. So far that hasn't matured.

[ 01. December 2006, 04:22 PM: Message edited by: cave76 ]

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cave76

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richtersl
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posted December 01, 2006 02:26 PM
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Thanks for the correction, Cave. I've seen your posts on that test and I appreciate you jumping in.

Now I'm not sure which test he was positive on. But I guess it really doesn't matter right now, because he's shown dramatic (according to his friend) improvement upon getting treated for LD.

If I find out anything else on him, I'll post an update in this thread.

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Linda

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cave76
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posted December 01, 2006 03:31 PM
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The doctor who spoke at ILADS who had been diagnosed with ALS noted that, although he had ALS symptoms, he also has symptoms inconsistent with ALS. That was why he kept searching for another answer.
PM
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Mike-
It took a good 18months before I started feeling better and I'd say I'm at 50% of my old self after 3 1/2 years of treatment. I had trouble walking, I forgot how to swallow (that lasted a few weeks). I also had trouble lifting my arms.

One doc diagnosed me with ALS about 8 years ago but now has reversed himself s as I have gained weight and muscle matter. My strength is much better.


I was also diagnosed MS and 'some yet undetermined degenerative neurological disease'.

I feel fine walking now, I still get tired and still have major relapses (probably herxes) but I have not trouble swallowing, I can breathe better now. I have even been able to work consistently over the last 6 months (part-time but up to 30 hours a week).

Keep working at it. I did a lot of hot baths and a friend took me to a sauna regularly. You want someone around after that - as it makes you really week. I also went to physical therapy at the 2 year mark regularly and did limited physical therapy at the 18 month mark.

Also, have twitches here and there but I used to have them all over my body. My palms are still sweaty.
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canadianmike
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posted December 02, 2006 09:46 AM
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thanks for all the replies. are cold hands aND feet part of als?
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vachick
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posted December 02, 2006 01:34 PM
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I don't think cold hands and feet are part of ALS...at least it is not a main symptom.

True, not perceived, muscle weakness followed by cramping and twitching are the main symptoms. In the case of Bulbar onset ALS, it can present as slurred speech and difficulty swallowing, mainly liquids.
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canadianmike
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posted December 02, 2006 08:20 PM
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quote:
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Originally posted by Aniek:
The doctor who spoke at ILADS who had been diagnosed with ALS noted that, although he had ALS symptoms, he also has symptoms inconsistent with ALS. That was why he kept searching for another answer.
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What symptoms of lyme are not consistent with ALS? I've heard people talk of this before, but never specify the symptoms.

I have tingling in the hands and feet, sweaty palms, oily skin on my forehead, hands will be cold even in a warm room, hot flashes, muscle attrophy, twitching and cramping that is on and off, balance issues, night sweats that cleared up with tetra, dark urine cleared up, slurred speech, sensitivity to light and sound, joint pain, ice pick headaches, ETC.
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wrotek
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posted December 02, 2006 09:20 PM
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Dr Lida Mattman believes that ALS, MS and Lyme are three diseases caused by different Borrelia species . For example ALS Bb spirochete is growing very fast, MS Bb has diffent cysts etc.
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pq
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posted December 03, 2006 01:21 AM
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“What symptoms of lyme are not consistent with ALS? I've heard people talk of this before, but never specify the symptoms.” candianmike

These links will help for starters:

http://actionlyme.org/ALS_&_Lyme_47%.htm

http://actionlyme.org/BIOMARKERS.htm

http://actionlyme.org/Pathology_indices.htm
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Travlr1
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posted December 08, 2006 11:02 PM
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Canadian mike,

Diagnosed with AlS by national level neuromuscular doc. Went on IV Rocephin and in 2 1/2 months regianed 15 pounds of muscle(just with activities of daily living,no exercising)with some strength gains also.

Even with an indeterminate western blot (did you have genus specific bands +)and an ALS diagnosis
I would get the central line of choice and start Rocephin(as long as your not allergic) asap and closely watch your response.

There was a small study done by a university on the east coast where 9 seropositve(for lyme)ALS patients were given fairly short (I think 1-2 months course of Rocephin) 3 improved dramatically 3 stayed the same,and 3 became worse.Now this is a very small study group, but even 30% improving is huge with a disease that is usually a terminal illness.

I definitely benefited from Rocephin(after failing on oral abx) and although I don't considered myself cured I am stronger and hold more muscle mass now(1 year later)than my lowest point.I am not a MD so this is just my personal opinion based upon my experience. If your not already with an LLMD get with one and go for Vitamin R!(healthcare workers term for rocephin)

Take care,

Travlr1
 

Jamiet

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Another thread

canadianmike
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posted August 21, 2007 07:33 PM
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Hi Derek, You sound identical to me. I have atrophy in my hands arms and shoulders. I have regained some muscle, mostly in my triceps, since starting rocephin in May. I have made some improvements with physio but they are small. I don't really have a lot of advice for you as i am in treatment myself right now and waiting to see how it goes. Seems to be helping, but I don't know for sure. Maybe Sarah can shed some light on this for us
 

Jamiet

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My PM with mike...you guys know me, i'm not trying to give false hope, just help

Jamiet
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Member # 11601 posted August 24, 2007 01:45 PM
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Canadian Mike,

ARe you on other forums, just want to see if you are the mike i've talke too before?

I have many sympotms you have. I would swear i have ALS, but...the ALS clinic sent me home.

How are you doing in treatment, have your symptoms diminished?

did you have any tongue issues?

Rgds,

jamie
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Posts: 28 | From: Lafayette, LA | Registered: Apr 2007

canadianmike
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Member # 10716 posted August 24, 2007 06:19 PM
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I also belong to canlyme but I don't recall talking with you before. I have had tongue twitching which seems to have gotten better through treatment. I have been on orals since January 06 and IV Rocephin since May 07. I am making some slow progress. My nurses and physio therapist are much more excited about the progress than I am as it seems so slow. Anyway we'll see how it goes.

Mike
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Posts: 5 | From: ontario | Registered: Nov 2006

Jamiet
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Member # 11601 posted August 24, 2007 07:37 PM
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Where was your atrophy at? Any tongue atrophy or "teeth" marks?

when you started the orals, did they make you worse first, like make the muscle wasting worse?

Sorry to ask questions, i just can't get ALS outta my head. I'm really scared, the malarone and zithro made me progress more in a week than i did in 6 most.

I am likely to get on IV rocephin next week. Did you have any side effects from it? Is that what made you really better?

How long did it take you to notice progress?

Rgds,

jamie
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Posts: 28 | From: Lafayette, LA | Registered: Apr 2007

canadianmike
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Member # 10716 posted August 24, 2007 08:48 PM
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Hi Jamie, yes I had tongue atrophy where my tongue looked like a lasagne noodle. It has improved dramatically with rocephin probably around 90% normal. My arms have also filled in a fair bit to the point the nurse had to order a bigger dressing for my picc line but I have a long way to go to regain function with them. My physio therapist is quit pleased with my progress so at least it's working. I started noticing improvements right away with orals, but they were small. With rocephin it took about a month before it kicked in and don't forget everyone is different. Why are you scared of ALS? Did you recieve a diagnosis? Do not diagnose yourself. There are many things that mimic ALS. Lyme is one of them. It is well known that if you respond to treatment, good or bad, it is working. If treatment makes you worse at first you are on the right track. RELAX! Let me know how you are.
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Posts: 5 | From: ontario | Registered: Nov 2006

Jamiet
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Member # 11601 posted August 24, 2007 10:54 PM
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It's just hard, with all this going on. An ALS specalist 110% ruled out ALS, but i exhibit alot of the symptoms.... ALOT.

I've had two EMG's, both pretty normal. A few NCV after discharges, but nothing to show ALS. My muscle biopsy also ruled everything else out.

i've had two rounds of lyme test, the first the WB's were almost postive. Alot of IND bands. So i did a month of abx, then retested, the ELISA came out positive, but the WB's were more negative.

After the 5 neuros i saw, including the ALS spec at houston methodist, ruled everything else out, i decided i needed to see a LLMD. I went last month, he said that he was 99% sure i had lyme, based upon my symptoms. He had a sheet of 38 items and i had 34 of them and 3 of the ones i didn't have were for women only. He said i have babesia also. I've had unexplained issues for 10 years....dizzy spells going back years, lymph nodes, chills, sweats....you name it...then all the ALS crap came on with full force.

It is good to hear a story like yours, it gives me hope, sorry that you are going thru this. The abx made me really bad, so i hope this IV one works, if not i will get on the Mepron again. It just made my ears ring so lound i couldn't stand it and i was horrible.

Thanks for your repsonses and please keep in touch. I am glad to hear you are getting a little better. ALS doesn't get any better, so you are def. on the right track.

Rgds,

Jamie
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That is very reassuring Jamie - and no doubt for Leslie and Annmarie too. Maybe you all have Lyme. But I doubt I have Lyme. I have very focal hand atrophy - left hand only - and in the place that ALS atrophy typically shows up (btwn thumb and forefinger). I dont have real weakness as such. My hand feels different - not as sturdy - but I can still manipulate the fingers to do things like buttons. Perhaps as the atrophy increases, I will not be able to do those things. What confuses me is how I can have lost this much muscle from my hand and still be able to use it. It looks like someone else's hand now - so thin and flat.
That along with my vocal cord issue make me think this isnt a diagnosis I can hope for. But I wish all of you well who may get an ALS reprieve. If i get one, I dont think it will be Lyme.

I'm also confused reading these posts that these folks were diagnosed with ALS to then later have that diagnosis changed to Lyme. On what basis were they diagnosed? Surely their EMG's were normal and if so, how did they get their diagnosis. If it were just symptoms, wouldnt others here have a diagnosis already? I guess I dont really understand the criteria. Pat was diagnosed without an abnormal EMG (could she have Lyme?) while Cindy, you, me, Leslie, Annmarie etc are all undiagnosed. I dont get it.
 

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I have the same as you, hand web atrophy and thinning...vocal chord issues...and a whole list of other issues.

same exact things.

I have been talking with this Derek mentioned above and the canadian mike, these are true stories and real people. They were both diagnosed with ALS. Derek is better in some places and worse in others.......remember..nothing gets better in ALS and Canadianmike is getting better and tongue improvement of 90%.

it's just something to look into, i don't want to give anyone false hope, but...there is a little light in the tunnel.

rgds,

Jamie
 

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Really? Really and very truly (as my 3yr old says)? Do you have hand web atrophy? I read Irma's post about her son and was left that day thinking that there is no hope for me.
I can't believe you have focal atrophy too. Is it one hand or both? Did you have the vocal cord tests done that I had. They told me I have partial vocal cord paralysis. It makes my voice sore, hoarse, my throat and tongue hurt - and of course it twitches.
I am just too scared to hope I guess. I am better some days than others but most days, death is the first thing on my mind when I wake and the last thing on my mind before sleep - that is assuming I get any sleep.
I wonder if once you have a diagnosis, you ever sleep again? I cannot imagine finding peace with this. I am such a coward.
I did take some comfort from a post yesterday that said that if your twitching decreases with neurontin, it is not ALS. Well mine has so that has to be good. I hope. God only knows. It is a rough ride, isnt it. I have added 2 new symptoms this week - garbled words/difficulty pronouncing words (like my tongue has fallen asleep) and wicked calf cramps.
And still the wait continues...........
Do you think that those of us who remain undiagnosed for a long time have slower progressing disease - so if it does turn out to be ALS, it will take longer to get to feeding tube/vent etc. You have to hang on to something, right?
I think you guys are all one step ahead of me - you have had the biopsy. I still have to get through that hurdle.
Meantime, keep posting. I will take ANY light in ANY tunnel. Thank you for all you do to inform and support.
 

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My next appointment is now Oct. Some screw up because the assistant quit and his new one messed up all the appointments. Who knows but now instead of Sept, its end of Oct.
I have had 3 EMGS - one in Dec (abnormal, pos shp waves, fibs, no fasics - conclusion: significant cx radiculopathy), then one in Feb (normal) and one in May (normal).
But when they did the one in May I could hear that thing that Sammantha described, like a helicopter taking off. I was freaked. But they said it was just a motor unit firing and was normal. The EMG was reviewed at Col Presb ALS clinic guy and he said it is normal. I dont get it. How can there be all this noise going on with my muscle and it be considered normal. My husband just says I must listen to the experts and they know more about how to read EMG's than we will ever know.
I dont know what tests are next. I have recently had brainstem MRI and CT scan with and w/out contrast. I had brain MRi and cx spine MRI done in Jan (they were looking for the radiculopathy that the physiatrist said I had based on my EMG). They were ALL clear. I have had a ton of bloodwork done - sensory motor panel or something. Took so much blood I wasnt sure they were going to leave me with any.
I just feel tired of being prodded and poked. I feel in my heart I know the outcome. My husband says I cannot possibly know and we must just wait. Wait, wait, wait.
I am interested in your tremor - were you told it was essential tremor, like me?
What about your EMG? Why didnt they do your tongue when you have issues there? I havent had mine done either. They did do paraspinals for me last time and again I could hear that thump thump noise but again, they said it was ok. I just dont understand. Surely, they wouldnt tell me that it was ok, if they werent sure. I asked last time if they were going to test my tongue and they said only if they see abnormality in my limbs and paraspinals. They didnt do it. After the EMG was over, they said they needed to review everything but they did not see anything to be concerned about.
Where does that leave me? Like you - no mans land. We know we have something wrong, the docs know it but they dont know what to call it.
The ENT wanted me to start immediate physical therapy for my vocal cords. The neuro said NO until we know why it happened and find out if it can be reversed or is permanent. I swear sometimes, I dont think the left hand knows what the right hand is doing.
Sorry - another long long post. You guys are my only place to talk.
 

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By the way, how old are you? (if you dont mind my asking). I sometimes feel like there are so few of us who are in the 30/40 age range and even fewer with babies. That is what makes my heart break. My kids arent even in school yet. I am so afraid to leave them w/out a mommy.They are still so so little and vulnerable.
 

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BE CAREFUL WITH THE KLONOPIN ANNMARIE! ITS DANGEROUS WHEN MIXED WITH SOME ANXIETY MEDS.

thx,

jamie
 

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How in the hell Jamie do you know all this? If all this stuff goes away for you and you get better, you should consider changing career and becoming a neuro! Apart from your already vast knowledge, you'd be the most compassinate doctor out there!
 

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Mama,

i would consider myself fortunate..even with sickness..i have a job where i was able to sit all day and research and research and research. I've since quit researching, google only has so much to offer and i've settled in wiht you guys, the support here is above and beyond anything else ALS diagnosed or not. Wonderful people here...!

I told my neuro all of us in here know just as much as most local neruos do, probably more......lol...mabye that's why she sent me home...lol
 

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Hey guys - I'm just up late reading up on what's going on with all of you and trying to make sure I can remember everything I want to talk over with my neuro tomorrow at my clinic appt. Mama, I have been diagnosed, with polymyositis. Unfortunately, I have many symptoms that don't fall into the poly category and some of my docs think it might be a misread bx.

Good news - my son's neuro (he see's for his adhd) told me today that he could certainly understand me being afraid I have als, since my sx sound like it, but that inflammation never shows on a muscle biopsy of a person with als. So, even if my diagnosis of poly is wrong, I still probably don't have als. I can't believe I haven't heard that before. I called Annmarie right out of the office to tell her because with all of our research this is something we haven't covered on here.

Today is the first time I have shown clinical weakness. My evaluation at PT showed that my right leg and right arm are weaker than my left and they also measured my right calf and thigh as being smaller than my left. Now I am really scared that they won't pinpoint this before it is out of control. I had three days of nonstop fascics in my foot and ankle which then turned to extreme cramping and turning in of my ankle. Today it is very weak and painful. I have never had this happen before and it happened quick like Pat's.

All of our sx sound the same, especially now that I am having voice problems and the cramping of my throat and neck. I don't even feel smart anymore. I just feel helpless and here. I am sorry that I don't offer support anymore, I just don't feel like I know anything that matters at this point. I want you all to know that I still think about each of you everyday, pray for you and really do care, though. Leslie
 

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Leslie - dont underplay your contribution no matter how you feel. Look what you learned and posted today about inflammation and biopsy. None of us knew that! You dont need to offer support to others. I think everyone here is very up and down on that front. Some days we are there to help and offer advice, support etc, and some days we just need a virtual hug. The great thing about this board is no matter what you need, you can find it (except for a cure of course which would be the mircale everyone wants).
 

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Thanks Jamie

Hi Jamie. Thank you so much for digging up the old posts and sharing them. My husband is having a lot of the same symptoms including night sweats. As far as I have read, night sweats aren't a symptom of ALS, right? He was hospitalized back in April but was never diagnosed. The doctors said that he either had a Tegretol reaction (given to help the fascics) or a tick bite. Whatever it was attacked his liver. He was given 3 days of IV antibiotics and started getting better. All of his tests for Lyme, Rocky Mountain Spotted Fever, etc. came back negative. I've asked his neuros repeatedly if he should be tested for Lyme again, and they say no. His spinal tap in the hospital was for meningitis. Should they do another one for Lyme?

His symptoms to date: 2 abnormal EMGs, right arm weakness, right shoulder atrophy, right bicep atrophy, fascis all over, severe muscle spasms all over after physical activity, night sweats, fatigue, urinary frequency, elevated cpk, all other blood work negative.

His doc called from UVA last week and said his last blood work was negative; GM1 and protein electrophoresis. I mentioned his hospitalization in April and how it seems like after that time he has gone downhill and questioned the antibiotics given then. The doctor said that he could take antibiotics for bronchitis or sinus infection, but if he ever needs to go to the hospital or have surgery to contact him, because there are certain antibiotics that they do not want him to have. Do you know what this could mean?

Any information or suggestions would be greatly appreciated. We are both very scared and feel we are getting the medical run around.

Thanks again.
Pam B in Va
 

CindyM

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Leslie- It is hard to feel smart when your are sick and feeling vulnerable. Doesn't mean you've changed, just that you are feeling awful. Hope you get some answers at the docs today! Cindy
 
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