CFS? MS? What is happening??!

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Gaia H
New Member


Date Joined Aug 2016
Total Posts : 5
   Posted 8/16/2016 1:56 PM (GMT -7)   
(I am an 18 year old girl for reference)
So for the past 3 or 4 years I was slowly developing signs of CFS, like (the obvious) excessive fatigue, weak and painful muscles and joints, brain fog etc. But when I got into looking at what it could possible be (since doctors weren't exactly doing much) I found that there are factors that sound like MS. Things like random pins and needles (that can stay for anywhere from minutes to a couple days), and this internal shaking that I can only describe as it feels like all my insides are vibrating and my hands shake almost constantly, but I appear completely fine. I've had a neurological exam that came back fine. My question is: Is it more likely that I have CFS, or could it be the development of MS?

ladybugdreams
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Date Joined Jun 2008
Total Posts : 726
   Posted 8/18/2016 8:44 AM (GMT 0)   
Gaia H, welcome to the forum. CFS/ME is diagnosed by eliminating everything else it could possibly be, the last thing that was eliminated for me was MS. These two illnesses have a lot of symptoms in common so it is reasonable that you have come up with these two together as possibilities. I had a CT scan of my brain to see if there were any lesions which you will see a lot in people with MS. I didn't have them so that was eliminated.

Does your Dr know about CFS/ME? I would ask him/her & if they don't you need to find another DR. Hopefully, they can check to see if you have MS at least. You are at such a young age but I have heard of those younger than you having one or both of these illnesses. I have had all of your symptoms at one time or another. I remember before my dx I spent a lot of time on the computer looking up my symptoms, it is hard not to have a diagnosis. I hope you find one soon, keep us posted. Gentle hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

Gaia H
New Member


Date Joined Aug 2016
Total Posts : 5
   Posted 8/18/2016 2:06 AM (GMT -7)   
Thank you Denise. My doctor does know about CFS/ME, in fact I have been referred to a Chronic Fatigue clinic with the hopes of getting a diagnosis of CFS/ME. I am just paranoid more than anything, that it could be the development of MS. To rule it out I only had a neurological exam, and no further tests or scans. I just don't know if symptoms like pins and needles and the internal shaking I described, can be a part of CFS/ME, or if it means I should consider MS again. Again, I'm probably being paranoid, but I'd rather be safe than sorry.


quote="jewelrylady"]Gaia H, welcome to the forum. CFS/ME is diagnosed by eliminating everything else it could possibly be, the last thing that was eliminated for me was MS. These two illnesses have a lot of symptoms in common so it is reasonable that you have come up with these two together as possibilities. I had a CT scan of my brain to see if there were any lesions which you will see a lot in people with MS. I didn't have them so that was eliminated.

Does your Dr know about CFS/ME? I would ask him/her & if they don't you need to find another DR. Hopefully, they can check to see if you have MS at least. You are at such a young age but I have heard of those younger than you having one or both of these illnesses. I have had all of your symptoms at one time or another. I remember before my dx I spent a lot of time on the computer looking up my symptoms, it is hard not to have a diagnosis. I hope you find one soon, keep us posted. Gentle hugs, Denise

ladybugdreams
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Date Joined Jun 2008
Total Posts : 726
   Posted 8/18/2016 3:08 AM (GMT -7)   
Gaia, I have had the internal shaking but not for a while, I still get pins & needles in my feet sometimes. I have found the symptoms of this illness morph & change as time goes on. The symptoms I had in the first few years are different now & not so prevalent. I deal more with fatigue, loss of stamina & brain fog. I am on disability as I can no longer work. I hope you find your answers & yes your symptoms do go along with CFS/ME. I want to relieve your anxiety on this. If they have ruled out MS they must be pretty sure it is not it. I am glad you are going to a Chronic Fatigue clinic, expect lots of tests & then a dx. I am happy for you that you get this opportunity however I hate to see you have to have this illness. I live a very sedentary life but I do try to enjoy what I have. Keep me posted what is going on in your life & how the clinic goes. Hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

conrad
New Member


Date Joined Aug 2016
Total Posts : 1
   Posted 8/20/2016 12:53 PM (GMT -7)   
hi. I'm new here. ? have you taken antibiotics in the last few years? If so check to see if they were from a family of drugs called fluoroquinolone. Your symptoms are similar to those who have been poisoned by these types of antibiotics. There is a group called Floxies that blog about the affect it has on their lives. There are several antibiotics in this family. It depletes a few of the essential minerals in our body needed for so many different functions. There is lots on info on this. Good Luck and Well Wishes.

Gaia H
New Member


Date Joined Aug 2016
Total Posts : 5
   Posted 8/20/2016 1:25 PM (GMT -7)   
Hi, I probably have taken antibiotics in the last few years, but none of the medicine names that came up ring a bell. I also looked at other peoples stories, and they describe their symptoms coming very quickly and suddenly, whereas mine was more a slow progression. But thank you so much! I never knew about floxing and if it was the case I couldn't thank you more.
conrad said...
hi. I'm new here. ? have you taken antibiotics in the last few years? If so check to see if they were from a family of drugs called fluoroquinolone. Your symptoms are similar to those who have been poisoned by these types of antibiotics. There is a group called Floxies that blog about the affect it has on their lives. There are several antibiotics in this family. It depletes a few of the essential minerals in our body needed for so many different functions. There is lots on info on this. Good Luck and Well Wishes.

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2195
   Posted 8/21/2016 3:25 PM (GMT -7)   
I have the same internal shaking/vibrations along with numbness, fatigue, memory priblems and much more! I had mri's when it sll started to rule out MS.

Testing shows I have high ebv, hhv-6, myco pneum, positive lyme c6 elisa (INdeterminate IGeneX lyme test), and possibly a few coinfections.

Is there a possibility you have Lyme? I usually post on that forum.

Gaia H
New Member


Date Joined Aug 2016
Total Posts : 5
   Posted 8/21/2016 3:40 PM (GMT -7)   
Hi, I was actually thinking about this a couple days ago and was going to post on the Lyme forum for help. I am just wondering since I live in the UK, if this is at all likely? From what I am aware Lyme disease is very rare here, this along with the fact that I never noticed any sort of rash that you get when you get Lyme disease. Maybe it is a possibility? I definitely want to talk to the doctor at the CFS clinic about maybe getting tests done, because I've heard far too many stories of people being diagnosed with CFS, fibromyalgia and the like, only to find it was Lyme disease.
Do you by any chance know what the likelihood is to get Lyme disease in the UK?
k07 said...
I have the same internal shaking/vibrations along with numbness, fatigue, memory priblems and much more! I had mri's when it sll started to rule out MS.

Testing shows I have high ebv, hhv-6, myco pneum, positive lyme c6 elisa (INdeterminate IGeneX lyme test), and possibly a few coinfections.

Is there a possibility you have Lyme? I usually post on that forum.
cry

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2195
   Posted 8/21/2016 4:19 PM (GMT -7)   
I would post your question on lyme board about UK. I did not get a rash though, and some say less than 50% get bulls eye rash. I will be very interested to hear how things go for you.
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