Status
Not open for further replies.

Todi

New member
Joined
Mar 4, 2008
Messages
4
Reason
Learn about ALS
Country
SE
State
Småland
City
Oskarshamn
Hello there, im sorry for the long post but please read it if you have time, i really need some answers from people "in the know".

My name is Joakim and i will be 25 years old this April, im from Sweden so please excuse any errors in grammar or spelling.

Im writing to ask if the symptoms i have sounds like ALS, why or why not and if something excludes it completetly or confirmes it completely.

The progress has been going on for either a year and a half or 4-5 months depending on if one symptom is linked or separate to the rest. Im not convinced, even though they are similair they are so spaced out in time that it might be two different things.

The following are the symptoms i have in chronological order from first discovered symptom to last.

1 - A year and a half ago, during the summer, i suddenly started to loose sensation in the front of my left thigh. This plus a constant tingling sensation that could border on crawling/buzzing/burning, not painfull, but definitely frustrating. It pretty much felt like touching the skin through a layer of cloth or if you compare the sense of touch to hearing i guess you could say that the highest notes where missing. I also got a very high threshold for pain to the point that i could probably stick a needle in my thigh without it hurting more than a normal pinch anywhere else. The tingling sensations stopped sometime in the last year only to resurface when the same sensation started being felt in both my legs later on. Since it passes almost a year betwean this and the next symptom that i felt i dont know if they are linked or separate things. Everything is identical feelingwise but much worse in my thigh and it is also constant there, where as everywhere else it has ups and downs in degree.

2 - Both hands experiences loss of sensation in the same manner as my left thigh only not as severe. Plus a tingling sensation. Usually in pinky and ring finger in both hands but could be present in the entire hand on both sides. This is what started 4-5 months ago.

3 - Twitching muskles, hard to pinpoint since i think i have had this happen all my life. But at the same time as the numbness in my hands started i started to really notice this and it has gotten worse after that. So what i remember from before might be something everyone experiences to some degree? The twitches are usually small and not visible, but larger twitches do happen acouple of times a day.

4 - Loss of this peak sensation + the tingling speads to the front of my forearms, up the left side of my face and is later experienced in both legs. From the face it seems to spread up over my scalp and unto my neck. But only my left side at this point.

5 - Stiff neck, backpains. I have had a bad back since i can remember but this is different. I get shots of pain i the middle part of the back if i bend it backwards and is constantly sore in the lower part.

6 - Gripstrength lowered, later generall strenghtloss is noticed. Also seem to lose some balance and motorskills. The face looses strength on the left side and the numbness and tingling makes some advances to the right side, mostly around the nose and right cheekbone.

7 - Lack of strength in legs slowly but constantly gets worse, feels like im constantly on the verge of cramping up but it hasnt happened yet. Somewhere around here my jaw starts to get weaker, i get tired when chewing gum or talking alot.

8 - Alittle sore throat and alittle harder to swallow.

9 - Shortness of breath.

10 - Weak headaces most of the time.


The loss of the "higher notes" of sensation mostly in forearms, legs and face is generally present all the time, as is the weakened legs. However all the other symptoms comes and goes. The tingling and loss of sensation usually also gets worse in the same degree as the other symptoms. These periods are first and foremost day/night but also seems to be "biweekly". The symptoms generally gets worse the longer the day progresses and i seem to also have especially bad nights every other weekend or so.

One weekend about 3 weeks ago i went to the emergency room because i paniked when i started having a harder time breathing for the first time. While lying on the bed waiting for the doctor to come see me, my arms and legs probably lost about 75% strength. My right hand curled up and looked like the hands of some people with cerebral palsy. I could just barely straighten it out for it to just fall right back into the curled position again. There where no cramps, it just lost all strength to straighten itself out. The legs where so weak i probably wouldnt have been able to support myself on them.
This went on for about 5-15 minutes with the most severe things such as the curled up hand stoping first at about a minute or two. The intense weakness sustained for about 10-15 minutes. After that i was back to my normal weakened state again and could walk home after the doctor had seen me.

My other medical history involves some bloodtests that came back "more or less normal" according to the doctor. An MRI of the brain that showed only a light sinus infection and some regual medical testing such as reflexes, balance and eye exams all of which seemed fine. The doctor did the babinski reflex test but i cant remember what result he got, i wasnt paying attention since i didnt know what the heck he was doing to me, felt like he was gonna rip the skin of my foot with that thing. However when i got home i checked it out on the internet and tried it myself. I get a normal reaction on my left foot but the wrong reaction on my right. This freaks me out since it seems to be a pretty serious reflex to get wrong. The normal "hit the knee" reflexes are pretty much fine, im not sure since i usually dont test my reflexes when im healthy. But if i HAD to choose i would say they are probably less active than hyperactive.

Last weekend i had another freaky experience. I was annoyed cause it felt like i couldnt breath normaly so i started to hyperventilate in frustration. Suddenly it felt like i had a thousand fireants crawling around my ears biting me. This spread to my face, mosly around my mouth, untill suddenly my upper lip got all stiff like it cramped up. This cramp lasted for about a minute and then went away. I tried again alittle while after that and the same thing started to happen again so i stopped. So apparently this is something i can do whenever now.

Personally i think i either have ALS or Lyme disease. There are some things that corresponds to both but also some things that, as far as i know, are alittle bit weird for both.

For instance i dont know of any tick bite, i dont remember any skin abnormalities, no real fever etc. My hope here is that as far as i understand it lyme can be "dormant" for years before the symptoms starts to show themselves.

But what i gather from ALS touch isnt supposed to be affected, but i often read about "numbness" so im alittle unsure about that part. And i dont know if ALS gets worse at night time like what i have does, this is usually a standard lyme symptom as far as i know.

However one of the bloodtests was for lyme, and it came back negative altough from what i have read lyme is notoriously hard to detect so might just be a wrong result.
I was given antibiotics right away by the first doctor i saw as she was convinced it was lyme, they seemed to help at first but after about half the prescription i started to have the tingling sensation back in my legs, a couple of days after that i got the phonecall that the tests where back and i was negative for lyme so i should stop eating the Doxyferm. I continued a couple of days after that since it had seemed that they where helping in the beginning but now almost all of the symptoms where back so i stopped eating them. Now however it feels like its worse again, not sure though since it has been up and down so many times the past few months and i have bad memory.

Thanks.

//Joakim.
 

Todi

New member
Joined
Mar 4, 2008
Messages
4
Reason
Learn about ALS
Country
SE
State
Småland
City
Oskarshamn
Another question is regarding the "timeline" of ALS. From first symptom in hand/arm for example how long does it take before the arm looses "normal function"?
For example when its a challenge to lift itself, let alone anything else.

How long before first symptom to complete body paralysis ala steven hawkings?

I understand that its individual but there must be some approximation?
 

fmarino

Active member
Joined
Mar 9, 2008
Messages
42
Reason
PALS
Country
US
State
nj
City
new brunswick
Hello Todi

I'm certainly no expert . . . but that doesn't sound like ALS at all (plus it's very rare for someone as young as you to contract it). You definitely have something going wrong with your body, though. Calm yourself as best you can and I'm sure in time, they will figure out what you have. But again, ALS just isn't what it is.
 

juliesmile

Active member
Joined
Feb 20, 2008
Messages
60
Reason
Loved one DX
Diagnosis
03/2008
Country
US
State
CA
City
Borrego Springs
Try to relax

I agree with fmarino. You definitely have something going on, but it doesn't sound like ALS. Usually there is no pain, no tingling, no sensory loss, no burning associated with ALS . MY husband has PMA which is a variant of ALS, and his started with weakness in just one leg. No pain whatsoever. Just started limping. Even the fasiculation doesn't cause pain. just an uncomfortable feeling. Go to a Dr., then neurologist. Let them work on it.
 

Tall John

Active member
Joined
Mar 30, 2007
Messages
81
Reason
PALS
Diagnosis
06/2007
Country
US
State
ca
City
novato
I don't think ALS

Could be MS, though......
 

Todi

New member
Joined
Mar 4, 2008
Messages
4
Reason
Learn about ALS
Country
SE
State
Småland
City
Oskarshamn
My sight is unaffected and i have no weird feeling when i lower my head, i have no bladder, bowel or sexual weirdness. Can it really still be MS with so many classical symptoms missing?
 

hardy42

Member
Joined
Mar 24, 2008
Messages
25
Reason
Learn about ALS
Country
US
State
in
City
elkhart
I'm no expert, but it doesn't sound like ALS or MS.
And TallJohn had no business telling you it could be MS. That was just irresponsible and mean.
I think you need to go to a doctor and I'm sure it isn't anything too serious.
Try to relax, Todi. You'll be fine.
 

laurel

Very helpful member
Joined
Jul 19, 2007
Messages
1,431
Reason
DX UMND/PLS
Diagnosis
07/2007
Country
CA
State
BC
City
Vancouver
Hi Todi,

You have a lot of sensory symptoms which would be more indicative of CIDP. You might want to read about CIDP and see if that fits better than ALS. My husband has CIDP and was diagnosed via EMG and nerve conduction tests and elevated protein in a lumbar puncture. We too worried terribly about ALS, and were relieved when he got the CIDP diagnosis. He currently is treated with monthly IVIG, and has regained strength in his right hand. He had atrophy, decreased reflexes, and fasciculations. Good luck.
Laurel
 

hopingforcure

Very helpful member
Joined
Feb 14, 2008
Messages
1,420
Diagnosis
09/2007
Country
US
State
USA
City
Any
Hi,
I agree could be a lot of things, does not seem like ALS would be the top of any of my lists though.
Do not get yourself all worked up, you have a lot in your favor. I think CIPD sounds like what my mind was going to, or even a virus, lymes, metablolic issue, lumber issue, or even MS, but that can be put to bed pretty much with a spinal tap and or brain mri. MS is getting more treatable all of the time, and can go into remission. I really do not think you have als, you do have a lot of things that can fit into Lyme's that is for sure. I was even thinking of a neuropathy issue, when you mentioned high pain threshold, that sure sounds more like that, have you been tested for diabetes, b12 issues, thyroid, all of these things could be what is going on. Meanwhile, hang, your young, and the odds are in your favor whatever the cause may be.. Hoping
 

Todi

New member
Joined
Mar 4, 2008
Messages
4
Reason
Learn about ALS
Country
SE
State
Småland
City
Oskarshamn
Hey.

Yeah, i actually found out about CIPD a couple of days ago and its much more of a match than ALS.

Sure MS is more treatable, but if it is MS in my case it probably is the progressive kind wich would leave me in pretty much the same condition as ALS with the wheelchairs etc or have i missed something? This has been going on now for several months straight wich is to long for it to be the normal kind of MS right?
 

hopingforcure

Very helpful member
Joined
Feb 14, 2008
Messages
1,420
Diagnosis
09/2007
Country
US
State
USA
City
Any
MS is not fatal, while it can come in different forms, some more severe and long lasting. I think that you have so many more likely things that could be going on, and much less ominous. Dont worry yourself, take it from a profressional worry wart, it just does not do any good. I have spent so much time worrying and for the life of me cant figure anything that is good coming of it.
 

jl73

Active member
Joined
Apr 3, 2008
Messages
31
Country
US
State
IL
City
Chicago
Way ALS is diagnosed

It is a rare disease, and very very uncommon for someone your age. You said you have back problems; because there is so much to the back and spine (nerves, vertebrae) it can cause lots of problems. ALS is diagnosed only when every other thing has been ruled out. The only risk factors are 1) having a relative diagnosed-genetic 2) maybe: heavy training and possible performance enhancement substances 3) below normal body weight/lack of nutrition 4) exposure to specific toxins in environment
 
Status
Not open for further replies.
Top