Aa
not well
My arms hurt so bad. My biceps and shoulders. I seem to be losing a lot of weight. Never hungry. Food just doesn't interest me. It doesn't smell good. Before I described my body as tired and I was never sleepy...now I am sleepy/fatigue. No sooner do I use a muscle and it hurts! Most of the time I can just lay in bed (at night) and my body just aches.
The fasiculations have decreased a lot. I use to have 100 or so an hour now i might have 50-100 a day.
Is this stuff you guys are experiencing? I wake up at night rolling over because i feel like my arms are lead weights. My legs use to do this they aren't as heavy.
It's ahrd to process that I have so many symptoms and no body can figure it out.
PCP tomorrow...maybe he will have some bright idea.
Rebeccah
The fasiculations have decreased a lot. I use to have 100 or so an hour now i might have 50-100 a day.
Is this stuff you guys are experiencing? I wake up at night rolling over because i feel like my arms are lead weights. My legs use to do this they aren't as heavy.
It's ahrd to process that I have so many symptoms and no body can figure it out.
PCP tomorrow...maybe he will have some bright idea.
Rebeccah
Hi Honey...sure sounds like you are going through a lot right now with no answers in sight! I wish I could help but what you are explaining is not really what I experienced when I was really sick in Oct/Nov.
I was having severe muscle spasms at night, so severe that I would be sleeping normally and all of a sudden the spasm would hit say in my upper thigh and I would find myself sitting up in bed screaming in pain. It was excrutiating for both me and my husband who was understandably scared to death!
I sure hope that your pcp has some new ideas for you and you can get some relief! This is ridiculous and it almost feels like I can feel your pain. Best of Luck tomorrow and let us know what the pcp has to say ok?
Lots of Hugs,
Rena705
I was having severe muscle spasms at night, so severe that I would be sleeping normally and all of a sudden the spasm would hit say in my upper thigh and I would find myself sitting up in bed screaming in pain. It was excrutiating for both me and my husband who was understandably scared to death!
I sure hope that your pcp has some new ideas for you and you can get some relief! This is ridiculous and it almost feels like I can feel your pain. Best of Luck tomorrow and let us know what the pcp has to say ok?
Lots of Hugs,
Rena705
I saw my PCP today and well he spent and hour with me reviewing all my stuff and this is what he is going to do
1. Refer to Hopkins rather than waiting for nuero to do it in MArch.
2. 2 week antibiotic trial since we know I was bit by a tick in JUne
3. Igenix lab test kit if no relief from trial of antibiotic
4. Referal for eyes (blurred vision)
5. Script for ambien and refill for xanx because he wants me rested and stress free (HA!)
6. referral for PT eval and treat for balance and strength stuff.
7. He thinks I am lsoing weight and decrease appetite from stress.
It was one of the more productive doctors appoinments.... an hour can you believe it! So we have a plan.
Rebeccah
1. Refer to Hopkins rather than waiting for nuero to do it in MArch.
2. 2 week antibiotic trial since we know I was bit by a tick in JUne
3. Igenix lab test kit if no relief from trial of antibiotic
4. Referal for eyes (blurred vision)
5. Script for ambien and refill for xanx because he wants me rested and stress free (HA!)
6. referral for PT eval and treat for balance and strength stuff.
7. He thinks I am lsoing weight and decrease appetite from stress.
It was one of the more productive doctors appoinments.... an hour can you believe it! So we have a plan.
Rebeccah
I am very happy to hear your appointment was productive, that is always so nice, wow an hour! Did he have any comments on the muscle pain and spasms? I have been thinking of you. A plan is good!
Jazzy
My PCP is funny and open minded and willing to admit when he is outside his knowledge base. He didn't comment on the muscle pain of spasms he thinks it's all related to the big picture.
however the ENT (who is friend) has eluded to MS. Now PCP wanted me seen by neuro because of an episode 3 years ago he never made any comments as to what he thought this was.
Today I told him that my neuro said i did not have MS because people with MS DID NOT have peripheral neuropathy (mine is axonal peripherial neuropathy). I told him that I did not know if I had MS but that I did not agree with that statement. He also knows that ALS is on the table. So with all that said he asked me who in the MS clinic I wanted to see at Hopkins.
I kind of tilted my head and said shouldn't someone in neuro be able to help us? So I don't know what he thinks. It was just an odd thing becuase we were discussing lyme and all sorts of things for him to focus just on the mS
Quix will love this... he told me to get a time line togther and "don't start in the middle of the path that you are in now..talk about 3 years ago and remember you came to me for vertigo balance and visual stuff nueropathy followed" "We need to remember what started all this." He also gave homework... reading on the disease process with lyme.
So far he's no do do doc!
Rebeccah
however the ENT (who is friend) has eluded to MS. Now PCP wanted me seen by neuro because of an episode 3 years ago he never made any comments as to what he thought this was.
Today I told him that my neuro said i did not have MS because people with MS DID NOT have peripheral neuropathy (mine is axonal peripherial neuropathy). I told him that I did not know if I had MS but that I did not agree with that statement. He also knows that ALS is on the table. So with all that said he asked me who in the MS clinic I wanted to see at Hopkins.
I kind of tilted my head and said shouldn't someone in neuro be able to help us? So I don't know what he thinks. It was just an odd thing becuase we were discussing lyme and all sorts of things for him to focus just on the mS
Quix will love this... he told me to get a time line togther and "don't start in the middle of the path that you are in now..talk about 3 years ago and remember you came to me for vertigo balance and visual stuff nueropathy followed" "We need to remember what started all this." He also gave homework... reading on the disease process with lyme.
So far he's no do do doc!
Rebeccah
Well Rebeccah, what do ya know, there is a doctor out there?? It's about time! I am so happy that you are finally getting someone to get a move on here!
You just sounded so down in your last post and in so much pain and today you sound very optimistic and happy! I am so happy for you!
It will be very interesting to see what comes of all the appointments he wants you to do and I hope that there is some relief for your pain out there and you don't have to wait too long! Let us know how you are making out ok and I will be thinking of you!
Lots of Hugs,
Rena705
You just sounded so down in your last post and in so much pain and today you sound very optimistic and happy! I am so happy for you!
It will be very interesting to see what comes of all the appointments he wants you to do and I hope that there is some relief for your pain out there and you don't have to wait too long! Let us know how you are making out ok and I will be thinking of you!
Lots of Hugs,
Rena705
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