I need to talk

Cheryl- listen, don’t freak yourself out. There is no sense worring about the unknown. You know as well as I that the more you worry the stress builds and you begin sinking. Take a deep breath, make yourself bouyant and go do something you enjoy. Particulrly somthing that soothes your soul and get your mind off it. I too am possibly facing ALS. But it aint over till it’s over. And it aint over!

After you get all of your testing done, and the doctor gives you the diagnosis, look at him in the square in the face and tell him he is full of CRAP! Then go do what he says.
(unless the diagnosis is a good one, then just say thank you)

Remember- Don’t count the days, Make the days count!

DaveB.
Farmington Ut.

🙂 Cheryl- a big hug to you.
I don’t know that your docs can be so black and white with you. Remember CIDP can have remissions and exacerbations- perhaps if your new tests show no progress, it is still CIDP but with exacerbations. I don’t see where it HAS to be ALS yet..Keep the faith!

Sigrid
“Go, fight, win”

Cheryl I want to talk to you too.
Dave is right, stress will do you in. We know that you can’t help thinking of “what might be”. But worrying about it won’t change it, the worry will only cause stress that will exaserbate the C I D P. Put your faith in God. No matter what the final illness is, He will be there to walk through the tough times with you. Call on Him for that peace that passes all understanding. Peace is the opposite of stress. Worry is the opposite of faith.
I have already prayed for you.
Mary Ann

cheryl, one day at a time. if the results haven’t changed it doesn’t mean als. you might have chronic gbs relapsing/remitting type like i have. there is a slight 1-3% of gbs/cidp people who have this type. don’t put more stress on yourself, you can’t change the outcome but you can make it worse by worrying and stressing about it. take it easy, stay positive and enjoy your life but don’t over do it. rest and relax and enjoy your family and friends. take care.:)

Cheryl, I know what you going thru, I’ve been in the same situation ( like so many of us/yous here ) with my husband back in Jan actually everything started in Nov last year pins& needles, numbness….no reflexes .Beginning of Jan he was walking with he’s knees locked back, finally admitted in hospital and got 7 days of IVIG ,after the second day of IVIG he couldn’t walk anymore, after 7 days he couldn’t move his legs and barely move his hands.Even though IVIG is not licenced yet for CIDP docs excluded CIDP from dx, he’s been transferred to another hospital and for 3 months he’s had taken tones of blood, a sural nerve, ,scans , bone marrow biopsy and so many other tests, they haven’t find nothing wrong in his body still they said is not CIDP only because he didnt respond to IVIG (even though the LP and the nerve biopsy indicated clearly it is CIDP).after 9 months they said is nothing else they can think about, is CIDP. So please dont make urself go thru the hell I went thru
I’m sure you’ll be just ”fine” like the rest of us here each in his way.
God bless you and please let us know how things are going on,if you believe in God helps a lot to pray.

Cheryl,

Having no improvement does not mean you have ALS. My husband got worse as the years rolled on and he still had CIDP, he would relapse all the time. You would need the MRI of your brain and spine to see if there are any lesions which are indicative of ALS. IVIG does not work for everyone either.
There would be times that IVIG would work for Frank and other times it wouldn’t. So don’t let the Dr scare the crap out of you. Personally If I were you, I’d get a second opinion.

I know it’s easy for all of us to tell you not to worry, but please try not to worry.

Many prayers, good thoughts and hugs being sent to you.

Cheryl,

Please take what your doctor has said with a grain of salt. Auto immune diseases and neurological conditions are difficult to diagnose. One of my neurologists (I have seen seven) was sure that I had myethenia gravis. When I found out what that was, I was scared silly. As it turned out, he was wrong, and I worried myself sick over nothing.

Suzanne

Cheryl,

Please take what your doctor has said with a grain of salt. Auto immune diseases and neurological conditions are difficult to diagnose. One of my neurologists (I have seen seven) was sure that I had myethenia gravis. When I found out what that was, I was scared silly. As it turned out, he was wrong, and I worried myself sick over nothing.

I agree with Donna, get a second opinion, and more, if you aren’t comfortable with the information you are being given.

Suzanne

Hello Cheryl,
I have to agree with what some of the other’s are saying, having no improvements does not mean that it is something other then CIDP. I know for a fact that when you are receiving IVIG’S you do not always feel improvements or feel stronger. For about two years, I felt like nothing but water was being infused into me. The improvements that came to me were so small that I questioned whether they were there at all. And I have CIDP.

Until you have a positive diagnosis, keep all that stress away from you as best you can. One way to do it, you are doing, you’re talking to us. Our prayers are with you for SERENITY in your life.

Have they done a spinal tap on you? My doctors did a spinal tap on me to rule out ALS. They told me they were doing the spinal tap to rule out ALS. I would at least ask them about it.

Although I haven’t contributed lately, I felt I needed to write to you. I have been getting IVIG for about 3 years now. It does not always make me any better but I know that it has lessened the severity of relapses.

At the start of my illness I had different diagnoses and confused doctors. Even recently I had a neurologist who disagreed with my neurologist’s diagnosis but couldn’t come up with a better one. (And this was at UCLA).

As others said stay calm. 😎 I’ve noticed that when I am under stress my discomfort rises considerably.

Prayers are with you.

Cheryl,
I have sent you a Private Message, so please check your box. I am one who had to go through many many test before my dx was changed from GBS to CIDP. That is because I went downhill so fast when the illness first struck. But just because IVIG does not work for you, why are they telling you it could be ALS? IVIG, plasmas pheresis, & steroids did not work for me, & I still have CIDP & nothing else. Mayo finally gave me the correct Dx in the middles of May in 2002, after I had been dx with GBS in the beginning of April 2002. We are all so different, but we all have CIDP. I am thinking a lot about you & just hope that they find the right treatment for you.
Pam
BTW, we are neighbors, as I live in MN…

Cheryl please don’t lose hope. I was misdiagnosed with MS for 3 years and had to go to Cleveland, OH for the right diagnoses. Doctors do not know everything. Don’t be afraid to get a second opinion. My Neurologist got mad that I went for a second opinion and refused to see me again so I found a new doctor and I am so glad I did. He is wonderful. Any doctor who does not want you to get a second opinion is not a good one. BEWARE.

Hi. You will be in my prayers. I think I’m like you, I am not seeing much improvement month to month. IN fact I feel I am slowly getting worse, the pins and needles and the pain is going further up my legs and arms and my lips are starting to tingle also, as well as my face twiches. I like you am very scared. It was at that point the first time I had the CIDP and thought that this time around (my first relapse in 12 years it could not possibly get bad since we caught it in the beginning stages. Right?) My NEuro said not to get discouraged that I am going through a relapse and we don’t know how long the progression will take. The IVIG is helping to slow it down. I guess it could be worse. Our bodies could go quicker. So I am taking the thought that like my father and his MS, the IVIG is like his MS meds, they may not “cure” you but they slow down the progression. HOpefully at the end of the relapse it will fix itself like last time and life will not be so hard

Best of luck:)

Cheryl, there is quite a difference between CIDP and ALS. In ALS it is all muscular, there are no sensory changes like numbness, tingling or pain. In CIDP it is mixed sensory and muscular.

Only 30-50% of people with CIDP respond at all to IVIG, so that cannot be used as a diagnostic test.

The standard investigations for ALS are Electromyography where needles are put into muscles and muscle biopsy. Lumbar puncture is not specific. All the other tests are to exclude other diagnoses.

Antero-Lateral Sclerosis, is the usual presentation of Motor Neurone disease, the other two are progressive bulbar palsy and progressive muscular atrophy. Discuss it further with your doctor as there are other treatments for CIDP such as plasma exchange, prednisone and immunosuppressant drugs. Best wishes, DocDavid

Hi DocDavid

I am interested in your comment about IVIG being effective for only 30-50% of people with CIDP. I have had 2 treatments of IVIG, different brands, and I’m just not sure if I’m improving. How much improvement is typical? I should mention that I also have CMT.

Helen