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Living with Polyneuropathy CIDP, GBS, & CMT

Symptoms - Just Checking


#1

Hello all. I'm new to this forum having just received a CIDP diagnosis a few months ago. I've been dealing with symptoms for a number of years, but wanted to touch base with people who are more knowledgeable than me about what I am experiencing.

My initial symptoms started in my feet with them feeling hot and tired probably 4 years ago, but I just chalked that up to getting older. This has now turned in to my skin being very sore (even between my toes), feet burning all the time and feeling like I have a bruise under the balls of both feet 24/7. I'm at the point now that I sleep with my feet out from under any covers as the sheets hurt my toes when they touch.

Next came pain in my shoulders. This felt like I had torn my rotator cuff or some other muscle.

Next was the fatigue and squeezing in my thighs and a pain in my right arm between the shoulder and elbow.

Then some back and hand pain.

And somewhere in here I started having short-term memory issues, focus problems which I call brain fog and days where I'm just dizzy. Because of this, most days I don't feel safe with my driving and my wife takes me to and from work.

I've had my first pulse steroid therapy session which made me feel better for about 3 days, but side-effects from the steroids (stomach issues, fatigue, dizziness and increase short-term memory and focus issues) seem worse that the pain it was to be helping. Especially with such a short beneficial period -3 days.

So now to my question, do these symptoms seem normal to those with more experience? I know each case is different, but I'm really just touching base to confirm that what I'm seeing is not out of the ordinary.


#2

HI, I don't have a diagnosis yet, but I suspect CIDP. I am dizzy all the time (been like this since April), extremely weak, can barely walk, legs feel wooden or as if I have heavy boots on them. Doctors were totally dismissive.

I can;t tell you whether your symptoms seem normal since I am trying to get a diagnosis for myself. But reading through these posts, your symptoms seem a lot less severe than those of many others.

Q; you say your symptoms started four years ago, but received the diagnosis only 4 months ago? Why did it take so long to get a diagnosis? Can you tell me in detail what was the process of getting a diagnosis since this is what i am trying to do? Thank you.


#3

Hi, I'm no expert as I am newly diagnosed myself but many of your symptoms are similar with mine just in a different order. I started with the arms and hands "going to sleep" type feeling , thought it was just poor circulation. Then the tiredness, the back & shoulder pain (specifically shoulder blade area) that burned and stung and cramped up to the point on knots in the muscle. Then the legs came next with spasms, cramps, major fatigue, icy hot feelings, vibration sensations in strange places, the memory issues and just thought issues such as get up to do something and forget why I got up, few episodes of dizziness and feeling disconnected from my body like being drunk without any alcohol, and along the way loss of feeling/sensation in my legs, arms, different parts of the body occasionally. I do get some what I call top pain relief with my current meds but not a whole lot. Like I said I am new here too but I think your symptoms are fairly normal, that or we both are not normal. Hope you find some lasting relief soon.


#4



Dana said:

HI, I don't have a diagnosis yet, but I suspect CIDP. I am dizzy all the time (been like this since April), extremely weak, can barely walk, legs feel wooden or as if I have heavy boots on them. Doctors were totally dismissive.

I can;t tell you whether your symptoms seem normal since I am trying to get a diagnosis for myself. But reading through these posts, your symptoms seem a lot less severe than those of many others.

Q; you say your symptoms started four years ago, but received the diagnosis only 4 months ago? Why did it take so long to get a diagnosis? Can you tell me in detail what was the process of getting a diagnosis since this is what i am trying to do? Thank you.

-Dana as I stated I am new to this too, but the symptoms you listed are same as I have experienced. As for diagnoses my journey began when my regular doctor thought my shoulder issues and hand numbness was a pinched nerve, so 1st an x-ray, then mri of the area when xray was negative. Then when mri negative and still having issues, that were getting worse visit to neurologist. EMG test, blood work, visit to rheumatologist, lots more blood work, MRI of brain, more EMG's and then finally diagnoses. I was lucky to get such a quick diagnoses I have read many people it takes years to get diagnosed.My specialist had to rule out stuff like the pinched nerve, lupus, MS, deficiencies, etc.. and to document the decline via EMG's . My nero did say he could do a spinal tap to help confirm but at this point felt it was redundant and unnecessary since he knew it was CIDP. Hope this helps and hope you figure out what's wrong soon.


#5



Dana said:

HI, I don't have a diagnosis yet, but I suspect CIDP. I am dizzy all the time (been like this since April), extremely weak, can barely walk, legs feel wooden or as if I have heavy boots on them. Doctors were totally dismissive.

I can;t tell you whether your symptoms seem normal since I am trying to get a diagnosis for myself. But reading through these posts, your symptoms seem a lot less severe than those of many others.


#6

My symptoms started more as minor irritations that have steadily gotten worse. For the first couple of years, I basically ignored the symptoms and moved on with life. About a year ago I went to the Dr and went through all the testing. A spinal tap confirmed CIDP this past fall. The symptoms have slowly but steadily moved to new locations and intensified in the old locations. Oddly I find that the cooler the weather the better I seem to do and the less intense my symptoms seem to be.

My diagnosis started with the common concerns of pinched nerves which resulted in MRIs of my head, feet and lower back. I also had many different blood and urine tests, but as I said above the spinal tap confirmed the diagnosis when significant amounts of protein was found in my spinal fluid.

Hope you receive a diagnosis soon, While there might not be a cure just knowing seems to help.


#7

Thank you. Once you were diagnosed, what treatment--if any--did they give you?


#8

I'm on Cimbalta (sp) now. 40MG once per day. I've tried all the others and found either temporary or no relief. The Cimbalta has helped for over 6 months now. It doesn't eliminate the pain, but does kind of dull it a little.

For those that have been dealing with this condition longer than me - do you see differences in pain intensity with the weather. I seem to have much worse days in warmer weather. No a good thing since I live in Central FL.


#9

I personally am on nuerotin, soma, and tramadol for the symptoms. As far as treatment my doctor gave me a 6 day steroid packet that had like 21 pills ( I took 6 1st day, 5 2nd day, and so on) unfortunately this made me feel worse. I am currently about to start IVIG treatment. I will be doing 3 days of IVIG in one week as a loading dose then I will have IVIG every 3-4 weeks.

Dana said:

Thank you. Once you were diagnosed, what treatment--if any--did they give you?


#10

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Dana said:

Thank you. Once you were diagnosed, what treatment--if any--did they give you?


#11

Hello, I also have problems in the warmer weather. It makes my nerves sing, fatigue in arms and legs, trouble walking, legs and arms give out more frequently, weakness. Symptoms seems hightened in the summer rather than the colder months. I also find I am so tired and nap more.
I thought it was just me. It can be pretty lonely living with CIDP and other autoimmune diseases.


#12

Hi…warm weather triggers me enormously…even hot showers puts me in a spin and fatigues me to the point where i breathe uneasy…


#13

Hot/Warmer weather makes me worse. Plus, now the high humidity causes me trouble breathing. That is just a recent development. I was in the hospital a few days around Easter time and they told me I have the beginnings of COPD. So, now thats a whole other issue. I have several health issues and the heat certainly makes me sicker. I need to move north/north west. I’m in North Carolina now & I HATE it.