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Living with Polyneuropathy CIDP, GBS, & CMT

Feeling frustrated!


#1

Idk how I can try and work Part time.
It feels as if Once or twice every 2 weeks I become bedridden. I am literally in bed with extreme body fatigue. My legs my arms and my mind are in an exhausted state.
Recently I traveled with my husband and daughter to a Rugby game in Ohio. We made stops so I can walk a little. I did sitting/ standing at the field. The temp was hot. And air quality was at alert. It felt like 104 degrees. We didn’t stay long.
A 5 1/2 hour drive and my daughter played the first 15min. She ended up with heat exhaustion and passed out. We ended up leaving and headed back home. She ended up recovering as we traveled back home. I felt my new normal of fine. However, as the evening went on We finally are home my body took its turn of exhaustion again. My legs and body were feeling extreme fatigue. I spent complete bed rest of 48 hours. My legs did not want to move at all! My arms were heavy to even lift up. My head felt as if I had too many cocktails and balance was off. Was I was regressing.?? I was getting scared! I don’t want to be paralyzed again! I called Dr. Gupta and my Family PA. 3 days in bed.
Bed rest of complete 48 hours!
Dr. Gupta called me back and informed me that heat and sun can mess with my nerves. He has diagnosed me with not CIDP but with GBS.
Dr. Gupta said he has some calls to make and thinks I should be seen with a rheumatologist and ? Infectious Disease.
Dr. Bradshaw a Dr at Upstate specializes in GBS.
A Dr. Gil Wolf from Buffalo looked at my case. I’m not sure of how much of My case he has seen. He seemed too busy. I know my last EMG test looked ok. He thinks I should see someone at Upstate as they are a teaching hospital and could assist me more locally and run other tests.
I am at a loss! I want to work so bad! I get a release from Dr. To work PT. Who would hire me? If I have a bad day it turns into days! I need answers. The Educational facility that I collapsed at in October 2016 is holding my job for one more year. After that they have to take me off. I have worked is Special Ed as a TA loving every second. I even asked the School if they could find or make a job for me working 1-1 with a behavioral child in a low sensory padded room. Even if I could help one student at a time. They cannot. I am so frustrated still waiting for disability to get approved. Get a lawyer. I did what has that done? Ummm nada I’m still waiting!

I was fine one day. Go to the Drs for a script get a cyst frozen off my head behind my ear. Within sec have a horrific brain freeze. Dr says follow up with MY Dr.
Drive home feel weird. Go to work and push thru only to collapse and end up in hospitals, Drs, specialist, and therapy’s and still not getting a full answer. Only BS answers of you have Afasia- Stress-migraines- Viral Meningitus- neropathy- neuritis- -
Chronic condition C-5, C-6, C7
Coug spinal stenosis
Thoradic Spondyloses
Carpal Tunnel
Trader Ulnar Palsy
Acute aseptic meningitus
Viral Meningitis secondary to Late acute EBV and co-morbid polyneropathy
Post viral fatigue syndrome
Peripheral vertigo
Vestibular nerve damage
Parenthesis of skin and
Weakness. Latest and newest diagnosis post infectious GBS.
I am now almost 2 years later and I am still waiting on everything.
I want to move on! I am trying to move on! I am not the energetic energizer bunny Gail I was. I can’t!
I try when I feel I am having a great day only to fail and become bed ridden! Please someone has to know something?!.
Gail


#2

For a start, my condition is NOT GBS nor CIDP related
BUT
I too have had the joys of multiple diagnosis with multiple symptoms from multiple dr’s but nothing concrete. Each dr has had their own opinions, discrediting any other medical opinions. Things fluctuate SO much trying to get a clear picture is difficult for the dr’s is near on impossible. I’m often explaining it as “Somedays I could leap a tall building in a single bound, but the following day I’m lucky to crawl out of bed…” They had me complete a pain diary for a month (I actually did it for 3 months for my own records) but still I have no answers.
I too was working but had to, finally (with a push), accept that things weren’t going to improve and officially resign. This was very difficult for me and I still have days where I ‘metaphorically’ beat myself up about this. As I say on the ‘good days’ I think I could return to work but then on the ‘bad days’ thank my lucky stars I’m not in the supervisory role I was. I would be placing myself and my clients at a massive risk.

Some people talk of ‘acceptance’ but when things fluctuate so much trying to accept is difficult. If I was constantly in a chronic state I believe I’d have no choice, but with good punctuating bad I seem to have that hope that a constant case of good is a possibility, only to come crashing back to reality.

I have also had to play the disability and insurance company games. Now, being that you are in the U.S., the systems are a bit different. I’m in Australia and initially my disability claim was rejected, but I had a Total Permanent Disability (TPD) Insurance policy. The insurer rejected my claim and I appealed the decision with the assistance of a lawyer who deals with such matters. It took a year and multiple dr’s appointments but eventually the insurer agreed that I am TPD and I received the payout. I applied for the insurer’s specialists’ reports and used those to claim disability income, which was then subsequently approved.
Now I must admit I stayed in contact with the lawyer regularly (in fact I’d say the lawyer saw me as a pain in the %^$# by the end) but I needed answers, I needed this resolved one way or the other and luckily it was resolved in my favour.

So, that’s been my experience with the systems. It was by no means an easy journey, in fact I doubt they could have made it any more difficult, but I’ve been described as a bit of a dog with a bone, I won’t let it go until I get an outcome. I am well aware that some people do not have such an experience with these organisations and without a concrete diagnosis making it even more challenging. My only recommendation would be to find a no win, no fee lawyer. They seem to fight harder because if they don’t win, they don’t get paid.
I do hope you get the result you need and deserve, some people think disability is a choice, but who on earth would choose THIS??? Not I, that’s for damn sure.

Merl from the Moderator Support Team


#3

The usual from all doctors .
GBS is a form you get out of…i was told…after 6 months ish…you can have it re-occur…
But i have been sitting with this for 5 years…now diagnosed with CFS because of fatigue …twitches…muscle weakness…etc

Try telling a guy that has been working Mondays to Sundays all his life to pace himself…
I am sure you are frustrated when they say you can work…WHEN?
When you have pain and onslaughts come at the worst possible times etc…

I wish i could say i am going to have a good day tomorrow…let alone today .
Just heard last week that nerves and muscles in eyes damaged…hence my droopy eyelids…never rains but it poors…
Now i walk around ( when i’m not sitting or lying down ) looking like a drunk…eyes half closed…twitches …tremors…limps…etc
Wish someone would have a miracle breakthrough…someone…anyone…

Hope you are not too despondent…though hard to do…hang in there…


#4

Thank you so much! I Def feel that it’s not in my head. Well sometimes it is. Lol I just have to look forward at how much I have “improved!”
I tell myself to stop complaining when I have my pity day. I’m learning I can have a day to just cry and move on. There are others that struggle more then I. The biggest frustration is just give me an answer! what’s my next plan? Why do I have to wait for disability to kick in? We work our butts off for health Ins and Social Security. But then when something happens they deny you. I’m not going to give up. I will keep going. Every day is a new day. Just not sure how it will go. We shall see. Thank you all for sharing your stories and info. I ty all. :muscle:t3:


#5

"I Def feel that it’s not in my head. "
This is great, but often the battle can be with the judgement of others who DO think its all in your head. I pushed myself and my limits too much looking for that improvement and for a while there was some improvement, but once I had improved as much as I could and that progression ceased, that was when my ‘mental’ battle kicked in. The mental was saying “Just do it” when the physical side was giving a single middle finger salute. I pushed myself beyond my physical limits and paid dearly for that. HINT: Don’t do that. Listen to your body, it will tell you when enough is enough. Others outside of our reality really, truly have no idea, they want to judge, then fine. But come spend a day, just one day managing ‘this’… …now judge. A single day would make then second guess their judgements.
We all need those ‘Pity days’, just don’t get stuck there. I was pretty hard on myself and beat myself up over not meeting my goals. It was my wife who sat me down and gave me the ‘hard word’ to stop. I was only driving myself into the ground, but it took someone outside of me, telling me, for me to accept it, reluctantly.

Merl from the Moderator Support Team


#6

Omg that’s EXACTLY how I feel! My husband tells me your going to be fatigued again and then be stuck in bed for days…

It is so hard. Because I want to do so many fun outdoor activities with my 9 year old. I can only do so much. I Wish They can find a shot or something to just re-jumpstart the legs and arms.


#7

Getting the right diagnosis will help you know what you are dealing with. You must try to abandon the life goals you had prior to sickness because as you are discovering you can’t bring your A game daily and work a full schedule like before. You now have a new reality to live in far different than before. You can’t bake yourself in 100 degrees outdoors. Ask someone to video and send it.
You can live like this but only one day at a time and in all things trust in whatever you place your faith in and draw nearer to Him/Her/It. I’m sorry for your pain and discomfort. Go to a medical center of excellence recognized by GBS/CIDP society, even if you must drive 5 hours. Listen to your husband more, it sounds like he has your back and shit out all the others that frustrate you with the it’s in your head bs!
You can/will get better physically because I certainly did. Some will see radical improvement(me), some just smaller amounts. Either way know that you can improve physically!
Your Friend In Him!
Bill Scott