Aa
Doctors appt was a waste!
Update
1/11 abnormal EMG in 3/4 limbs Nuero could not comfort me re: ALS and feels strongly THAT IT IS NOT MS because people with MS do not have peripheral neuropathy. When I asked what types of disorders come and go then come back again....he said my question was too vague....
1/12 MRI of thoracic and lumbar more blood work to include western blot
Today Rheumatology .1/17.. ya he doesn't know. He doesn't understand why my joints hurt or why my muscles hurt all the time. He did say I didn't have lupus or fibro or saradosis or rhuematory arthritis.
ALL my MRIs from 1/12 were normal and all my blood work is normal we are waiting for the western blot. He thought Hopkins was a good idea. He said he has no real understanding of ALS and MS is really hard to diagnose so he can't really comment so he did a blood test for Vitamin D and ANti cc something.
The he asked me what I thought was wrong with me..... well this WAS the gal that thought she had a severe sinus infection causing all the vertigo, balance, eye pain etc. next thing you know we are talking ALS and MS. What the @$^$&! Even if I had an idea is anyone going to listen? In case you're wondering I now realize it was not a sinus infection.
Update on symptoms Good news I can stand and walk I am so much better than in December. I can work a full day and come home and function. I can even walk down stairs faster and I walked up a flight of stairs 3 times with fatigue and little tightness/soreness in my calves.
I am not sleeping. I never had trouble sleeping waking up hot and I feel like my whole body is vibrating and the muscle twitches and fasciations. My hands and arms are still difficult. Typing is terrible. If I hold the phone long my fingers hurt then my biceps hurt. It goes away in a few minutes. I was leaning on my hubby the other day and I was sore from leaning on him.
My balance is TERRIBLE! Geeze I couldn’t keep the umbrella over my kid’s head this AM at the bus stop.
I have a follow up with neuro in March. No other appointments scheduled. Ugh
Rebeccah
1/11 abnormal EMG in 3/4 limbs Nuero could not comfort me re: ALS and feels strongly THAT IT IS NOT MS because people with MS do not have peripheral neuropathy. When I asked what types of disorders come and go then come back again....he said my question was too vague....
1/12 MRI of thoracic and lumbar more blood work to include western blot
Today Rheumatology .1/17.. ya he doesn't know. He doesn't understand why my joints hurt or why my muscles hurt all the time. He did say I didn't have lupus or fibro or saradosis or rhuematory arthritis.
ALL my MRIs from 1/12 were normal and all my blood work is normal we are waiting for the western blot. He thought Hopkins was a good idea. He said he has no real understanding of ALS and MS is really hard to diagnose so he can't really comment so he did a blood test for Vitamin D and ANti cc something.
The he asked me what I thought was wrong with me..... well this WAS the gal that thought she had a severe sinus infection causing all the vertigo, balance, eye pain etc. next thing you know we are talking ALS and MS. What the @$^$&! Even if I had an idea is anyone going to listen? In case you're wondering I now realize it was not a sinus infection.
Update on symptoms Good news I can stand and walk I am so much better than in December. I can work a full day and come home and function. I can even walk down stairs faster and I walked up a flight of stairs 3 times with fatigue and little tightness/soreness in my calves.
I am not sleeping. I never had trouble sleeping waking up hot and I feel like my whole body is vibrating and the muscle twitches and fasciations. My hands and arms are still difficult. Typing is terrible. If I hold the phone long my fingers hurt then my biceps hurt. It goes away in a few minutes. I was leaning on my hubby the other day and I was sore from leaning on him.
My balance is TERRIBLE! Geeze I couldn’t keep the umbrella over my kid’s head this AM at the bus stop.
I have a follow up with neuro in March. No other appointments scheduled. Ugh
Rebeccah
Hi Rebeccah,
I had immediate onset after delivering my third son - I had pancreatitis and went into a diabetic coma when having him (premature). I had a terrible time during the pregnancy, but know the symptoms now were the high blood sugar. (I didn't know I was diabetic and the doctor & hospital failed to diagnose me).
The rest of this started right after having him. After I was moved down from Icu to nicu maternity (we were both still in the hospital) my eyes began jumping back on the page when I would try to read a menu. It was impossible to read. During this 'section' of time my arms would go immediately numb when lifted above my head. I could not curl/fix my hair.
Mine leveled off after this section of time, and I became what I call, about 40% of my original body. I've since had sections of time where things are worse in addition to the new 40% body. It's hard to describe.
I have dizziness, I'm not sure if it is considered the same as vertigo, I've wondered about that. It often feels like motion sickness.
I am exactly the same, with things that put any pressure on my body cause pain. Mine will go away also.
Hugs
Jazzy
I had immediate onset after delivering my third son - I had pancreatitis and went into a diabetic coma when having him (premature). I had a terrible time during the pregnancy, but know the symptoms now were the high blood sugar. (I didn't know I was diabetic and the doctor & hospital failed to diagnose me).
The rest of this started right after having him. After I was moved down from Icu to nicu maternity (we were both still in the hospital) my eyes began jumping back on the page when I would try to read a menu. It was impossible to read. During this 'section' of time my arms would go immediately numb when lifted above my head. I could not curl/fix my hair.
Mine leveled off after this section of time, and I became what I call, about 40% of my original body. I've since had sections of time where things are worse in addition to the new 40% body. It's hard to describe.
I have dizziness, I'm not sure if it is considered the same as vertigo, I've wondered about that. It often feels like motion sickness.
I am exactly the same, with things that put any pressure on my body cause pain. Mine will go away also.
Hugs
Jazzy
ALS stands for Amyotrophic Laterl Sclerosis also known as Lou Gehrigs disease. It is a progressive neurodegenrative disease. Typical between 40-70 however Lou Gehrig died when he was 38. It is more common in males than females however i have known 2 people with it and both were women and I work with a speech therapist who is currently treating a female with ALS. I lost a female co-worker to it and she was 41 ( also a speech therapist) It is usually fatal between 1-5 years after diagnosis.
The symptoms are very similar to a lot of other disease (lymes) and there is no test. It's called a "rule out diagnosis". It's onset is usually subtle and it progresses rapidly. So when I google my symptoms bilateral arm and leg weakness, burning, muscle fasicualtions, balance, abnormal emg etc. ALS is always popping up there.
I know just enough to drive myself crazy!
My vertigo seems to be related to walking, balance etc. Little tilts when I look at the computer screen. or looking up and down to type, driving, sneezing. Sometimes I just get a wave.
I have light sensitivity. I went to lunch the other day with a friend (Panaras?) Anyway I hard time looking at her or in her direction it was as if I was staring into the sun.
I don't get migraines. My neck is terribly sore when working on the computer. My hand coordination is the thing that is driving me bonkers these days.
My weakness in arms and legs is so much better than in december.
Do you get burning in your face?
I have spent many a night curled up with my heating pad :)
Thanks for your words of encouragement. They are appreciated!
Rebeccah
The symptoms are very similar to a lot of other disease (lymes) and there is no test. It's called a "rule out diagnosis". It's onset is usually subtle and it progresses rapidly. So when I google my symptoms bilateral arm and leg weakness, burning, muscle fasicualtions, balance, abnormal emg etc. ALS is always popping up there.
I know just enough to drive myself crazy!
My vertigo seems to be related to walking, balance etc. Little tilts when I look at the computer screen. or looking up and down to type, driving, sneezing. Sometimes I just get a wave.
I have light sensitivity. I went to lunch the other day with a friend (Panaras?) Anyway I hard time looking at her or in her direction it was as if I was staring into the sun.
I don't get migraines. My neck is terribly sore when working on the computer. My hand coordination is the thing that is driving me bonkers these days.
My weakness in arms and legs is so much better than in december.
Do you get burning in your face?
I have spent many a night curled up with my heating pad :)
Thanks for your words of encouragement. They are appreciated!
Rebeccah
I just picked up your sudden onset and rapid progression comment.
Ticking the box on that one too, as with vertigo also. And Visual disturbances. Usually the visual disturbances now are what start my little "attacks" or whatever they are. The other night I was sitting down watching TV and my right eye went completely blurred over, blind for about 30 seconds then other symptoms followed after that. Aparently this can be auras starting before a migraine. But sometimes I dont get the migraine.
I was speaking to my docs about the motion sickness/vertigo- I have noticed computer screens & tvs, do trigger this sometimes.
Have you tried to work out what your doing just before the vertigo starts?
What is ALS? I saw you refer to that a couple of times in your post.
Muscle soreness can totally relate, this came after intial onset for me. Muscle weakness, the other day I could not even change my daughters quilt/doona cover & sheets on her bed my arms became so weak. Then I had trouble hanging the stuff on the clothes line outside.
The other night my right leg was in so much pain, it was a really hot day & warm night but I had to wrap my leg up as heat was the only thing that seemed to ease the pain a little.
Its hard to say hang in there on a bad day. We just have to keep going until we get answers.
Take care
Ticking the box on that one too, as with vertigo also. And Visual disturbances. Usually the visual disturbances now are what start my little "attacks" or whatever they are. The other night I was sitting down watching TV and my right eye went completely blurred over, blind for about 30 seconds then other symptoms followed after that. Aparently this can be auras starting before a migraine. But sometimes I dont get the migraine.
I was speaking to my docs about the motion sickness/vertigo- I have noticed computer screens & tvs, do trigger this sometimes.
Have you tried to work out what your doing just before the vertigo starts?
What is ALS? I saw you refer to that a couple of times in your post.
Muscle soreness can totally relate, this came after intial onset for me. Muscle weakness, the other day I could not even change my daughters quilt/doona cover & sheets on her bed my arms became so weak. Then I had trouble hanging the stuff on the clothes line outside.
The other night my right leg was in so much pain, it was a really hot day & warm night but I had to wrap my leg up as heat was the only thing that seemed to ease the pain a little.
Its hard to say hang in there on a bad day. We just have to keep going until we get answers.
Take care
I would say visual and vertigo were first, then fine motor discoordination and gross motor weakness at the same time, then joint pain soreness and muscle ftigue that improves with rest. I have definite Short term memory issues. Walk upstairs and forget what i went up there for and word retievial difficulties.
I guess the diffuiculty focusing on the computer and attending visually did get worse as things progressed.
My MRI on saturday kicked my !@#$ having to lie so still. Iwas fasiculating and sore.
When I lean against someting and I am sore it soes away after about 20 minutes or so. I did have one day last week where every inch of me hurt all day! News year the dog fell asleep against my leg. His a little thing. I was so sore from him lying a gainst me it woke me up.
Did you have sudden onset and rapid progression?
Rebeccah
I guess the diffuiculty focusing on the computer and attending visually did get worse as things progressed.
My MRI on saturday kicked my !@#$ having to lie so still. Iwas fasiculating and sore.
When I lean against someting and I am sore it soes away after about 20 minutes or so. I did have one day last week where every inch of me hurt all day! News year the dog fell asleep against my leg. His a little thing. I was so sore from him lying a gainst me it woke me up.
Did you have sudden onset and rapid progression?
Rebeccah
Rebeccah,
I am listening to your situation with much insterest since we have so many symptoms, and the abnormal Emg's in common. I have heard the same as Biowham, that the peripheral neuropathy just complicates things for diagnosis. I've had one doctor (not my reg. neuro) tell me I have MS, just by my medical records and no physical exam. But my Neuro does not agree, so I have no official diagnosis.
I don't know what to think about it.
All mine are episodic also (had to type that word 5 times to get it right- man I love my brain!) with a 'baseline' of maybe 40% of the body I used to have. The joint pain we have in common - you would think that would be an outright sign of whatever is wrong.
I've had joint x rays when mine were hurting so badly I could barely move - and the x rays looked fine. So whatever is happening here in the joints, doesn't show on x ray.
The day of the x ray was actually agony with laying on that hard metal table.
Your mention of being in pain, where you leaned on your husband really rang true for me, anytime my body has some type of resistance from an object, even such as a chair, I am very sore there afterward.
Did your eye problems - with the vision jumping on the page, start just after all this?
Jazzy
I am listening to your situation with much insterest since we have so many symptoms, and the abnormal Emg's in common. I have heard the same as Biowham, that the peripheral neuropathy just complicates things for diagnosis. I've had one doctor (not my reg. neuro) tell me I have MS, just by my medical records and no physical exam. But my Neuro does not agree, so I have no official diagnosis.
I don't know what to think about it.
All mine are episodic also (had to type that word 5 times to get it right- man I love my brain!) with a 'baseline' of maybe 40% of the body I used to have. The joint pain we have in common - you would think that would be an outright sign of whatever is wrong.
I've had joint x rays when mine were hurting so badly I could barely move - and the x rays looked fine. So whatever is happening here in the joints, doesn't show on x ray.
The day of the x ray was actually agony with laying on that hard metal table.
Your mention of being in pain, where you leaned on your husband really rang true for me, anytime my body has some type of resistance from an object, even such as a chair, I am very sore there afterward.
Did your eye problems - with the vision jumping on the page, start just after all this?
Jazzy
In my case I would welcome MS over ALS any day. I keep hearing "We may just have to wait and see what happens" That is so hard.....
Agree with insurance stuff. FYI That is true even for young children who are looking at an asthma Dx . Should buy a policy on them that they can take over before dx. Diabetes too.
You are all in my prayers.
Rebeccah
Agree with insurance stuff. FYI That is true even for young children who are looking at an asthma Dx . Should buy a policy on them that they can take over before dx. Diabetes too.
You are all in my prayers.
Rebeccah
You are entitled to your bad attitude. You worked for it, you earned it. On a lighter note(yeah, right) On a recent post it was highly suggested to limbo-landers to purchae life insurance, and long-term disability insurance, BEFORE a diagnosis is made, as it is impossible afterward. It is a good suggestion, especially if you have a family. Good luck.
I don't have all the same symptoms that you guys do, but I totally relate to the complete frustration that you feel. I have been to 2 doctors this week and think I know less somehow than I did before.
My mom was angry w/me for not doing the "happy dance" upon hearing that I only had a small chance of having MS. I don't think others can understand that SOMETHING is wrong and until we know what it is, it just gets worse and causes us more problems.
I feel that all I can really do at this point is get a large life insurance policy and start signing advance directive paperwork.
And oh yeah, hope that someone figures this all out before I really need that stuff!
Sorry for the bad attitude!
Stacey
My mom was angry w/me for not doing the "happy dance" upon hearing that I only had a small chance of having MS. I don't think others can understand that SOMETHING is wrong and until we know what it is, it just gets worse and causes us more problems.
I feel that all I can really do at this point is get a large life insurance policy and start signing advance directive paperwork.
And oh yeah, hope that someone figures this all out before I really need that stuff!
Sorry for the bad attitude!
Stacey
No genetic testing yet. ALS is not episodic and to the best of my knowledge you don't feel better and it's alot more subtle onset. All 4 of my limbs got hit at once. I also started with vertigo and visual involvment. I haven't found anyone mentioning vertigo. I have all this fluctuating burning and soreness, joint twinge ache.
Now my neuro would say to the above symptoms are possible with ALS just rare.
I wish I understood more about the peripheral stuff.
I did the hot cold thing last night.
Rebeccah
I can feel your frustration. I just saw your post after posting mine about my latest results and still cannot believe the similarities we share. I had resolved myself last night that this was just getting too hard and I dont think Im even close to where you have been yet. But I do feel for you I really do and the waiting is the hardest part. Waiting for appointments, testing, results, agh!
Since posting my rollercoaster limbolander post earlier I did find out what type of migraine they thought I had as I couldnt remember it but then it just came to me its Familial hemiplegic migraine-inherited as my mother has it- ataxic diseases. I am also going to be tested for peripheral neuropathy when my specialist refers me to a neuro.
With the waiting in between appointments for my specialist, I go back to my local doctor GP to bounce ideas of, get more bloods for this or that, order more scans etc. He is more than happy for me to do this while I wait inbetween appointments. I guess that helps me get through, so that I am not sitting around waiting.
Im off to be tested for lupus today, get results in a couple of days. If I had waited to see my specialists in 3 wks he may or may not have ordered them then and I would have had to wait longer.
I am finding there are ways around this waiting game to a certain point ;)
Keep in touch and hang in there.
Sonaya
Since posting my rollercoaster limbolander post earlier I did find out what type of migraine they thought I had as I couldnt remember it but then it just came to me its Familial hemiplegic migraine-inherited as my mother has it- ataxic diseases. I am also going to be tested for peripheral neuropathy when my specialist refers me to a neuro.
With the waiting in between appointments for my specialist, I go back to my local doctor GP to bounce ideas of, get more bloods for this or that, order more scans etc. He is more than happy for me to do this while I wait inbetween appointments. I guess that helps me get through, so that I am not sitting around waiting.
Im off to be tested for lupus today, get results in a couple of days. If I had waited to see my specialists in 3 wks he may or may not have ordered them then and I would have had to wait longer.
I am finding there are ways around this waiting game to a certain point ;)
Keep in touch and hang in there.
Sonaya
Is ALS episodic? I hadn't heard that it is. I have that body vibration thing, it's very weird, and I wake up hot and then will shift to being shivering cold.
Your peripheral results do suggest...well, something peripheral. I hadn't heard that having one precludes the other, and I don't think it necessarily does. It just complicates the picture (just what you needed, right?).
W/ abnormal EMG in three/four limbs, I'm thinking that Hopkins might be a good place to be.
Has anyone done any genetic testing on you for heritable ataxic diseases or peripheral neuropathic disorders?
E
Your peripheral results do suggest...well, something peripheral. I hadn't heard that having one precludes the other, and I don't think it necessarily does. It just complicates the picture (just what you needed, right?).
W/ abnormal EMG in three/four limbs, I'm thinking that Hopkins might be a good place to be.
Has anyone done any genetic testing on you for heritable ataxic diseases or peripheral neuropathic disorders?
E
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