New to MS

[JEM86]

My name is Jim. I am new to MS. I was diagnosed in January. By all current information I have Primary Progressive type. I am not new to chronic illness. I have had a disorder called Charcot-Marie-Tooth since early childhood. It is a neuromuscular disorder that has many of the same symptoms of MS. However, there were symptoms that did not fit with CMT. I have found a number of people with CMT who also have MS, although there is nothing to suggest a causal relationship. In July of this year, I began having vertigo and nystagmus. The nystagmus has stayed with me. It is only now getting better with the help of Tegretol. A neuro-opthomologist I see for the nystagmus saw plaques in my brain that made him suspect MS. A lumbar puncture confirmed it. This was overwhelming at first, but I see that the diagnosis of MS simply puts a name to the symptoms I am already having. These are symptoms the CMT could not explain.

I am married and have two children. I have been on disability for around 10 years. I thought it was the CMT, but I now believe it is a combination of the two disorders. I am a Licensed Clinical Social Worker. I look forward to learning more about MS. I would like to also learn more from people who have both MS and CMT.

[JerryD]

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Hi Jim ! My name is JerryD from Philadelphia, PA. I also have PPMS . I have been on disability for about 8 years. I, recently, had Lemtrada infusions which, I hope, will stop the MonSter and will give me some sort of tolerable life back !
Don't be a stranger. This site is chock full of MSers that know this disease and its crazy symptoms. Good luck! Glad you found us!

[Seasha]

Hi Jim! Just wanted to also welcome you to MSWorld! Sorry you are having to deal with two chronic conditions now. You might also find more responses about CMT and MS from others if you post a new thread in our NMO and Other Disorders Forum if others don't respond here.

A good place to learn about MS is through the NMSS (http://www.nationalmssociety.org/) and others MS organizations like Multiple Sclerosis Foundation(https://msfocus.org/), Multiple Sclerosis Association of America (http://mymsaa.org/) and National Institute of Neurological Disorders (https://www.nih.gov/) These are all good starters. And of course, hopefully you can learn here by others experiences.

Take care and hope to see more of you!

[DogMa]

Hi Jim

Sounds like you have a lot on your plate, but are handling it all with grace. This is a great site for all sorts of reasons - support, knowledge and experience transfer, updates on related meds and research, etc.
Looking forward to your future posts.
Welcome!

Carol

[Jules A]

Hi and welcome!

[REG53]

Hello JEM86 and welcome. Sorry to hear you have CMT and MS. This is a great site. A lot of knowledgeable here.

[jeannef1]

My name is Jim. I am new to MS. I was diagnosed in January. By all current information I have Primary Progressive type. I am not new to chronic illness. I have had a disorder called Charcot-Marie-Tooth since early childhood. It is a neuromuscular disorder that has many of the same symptoms of MS. However, there were symptoms that did not fit with CMT. I have found a number of people with CMT who also have MS, although there is nothing to suggest a causal relationship. In July of this year, I began having vertigo and nystagmus. The nystagmus has stayed with me. It is only now getting better with the help of Tegretol. A neuro-opthomologist I see for the nystagmus saw plaques in my brain that made him suspect MS. A lumbar puncture confirmed it. This was overwhelming at first, but I see that the diagnosis of MS simply puts a name to the symptoms I am already having. These are symptoms the CMT could not explain.

I am married and have two children. I have been on disability for around 10 years. I thought it was the CMT, but I now believe it is a combination of the two disorders. I am a Licensed Clinical Social Worker. I look forward to learning more about MS. I would like to also learn more from people who have both MS and CMT.

Hi Jim, Welcome. My granddaughter,my daughter and I all have MS. My mother, my brother and many aunts, uncles,cousins, nieces and nephews have CMT. I have never met or heard from another person outside my family with CMT

[NintendoGurlie]

Hi Jim! Welcome!

Nice to meet you! Glad you found our own little spot of the world where people are here who are like us and understand us. You'll find a lot of support here and great people who understand. From people with MS to their caregivers and supporters.

Don't be a stranger, soak up this place, SO much to learn from people who truly understand or need understanding. You help too just by being here and saying hi!

Take care and let's keep on fighting! You sound like you're used to a fight with a disease, let's kick butt together here in this piece of the world. You're positive and that goes a long way, not just for you but for all of us who cross your path!

NintendoGurlie "Memphis"

[JEM86]

New to MS

I am so sorry for not having been on here for awhile. I lost my log-in and password. I just now read some of your kind posts and would like to respond to some and ask another question. I hope to get back on here sooner than I did this last time.
One of the symptoms I am experiencing is a problem with memory (hence the above situation) and other cognitive deficits. I am interested in learning more from others who experience this.
I am also looking for others who have both MS and CMT. I had several respond they have both on the CMT forums. I also saw at least one post that acknowledged having both diagnosis. Also, for those who have both, do you know of any forums for those who have both diagnoses?
As I said, I am thankful for those of you on these forums and hope to learn much from you and to contribute to the discussions.

[JEM86]

More information

I am so sorry for not having been on here for awhile. I lost my log-in and password. I just now read some of your kind posts and would like to respond to some and ask another question. I hope to get back on here sooner than I did this last time.
One of the symptoms I am experiencing is a problem with memory (hence the above situation) and other cognitive deficits. I am interested in learning more from others who experience this.
I am also looking for others who have both MS and CMT. I had several respond they have both on the CMT forums. I also saw at least one post that acknowledged having both diagnosis. Also, for those who have both, do you know of any forums for those who have both diagnoses?
As I said, I am thankful for those of you on these forums and hope to learn much from you and to contribute to the discussions.

I thought I would add more personal information. I don't remember what I said in previous posts. I am married- 30 years last year. We have two children, both adults. Both great kids. We have lived in the same community for 27 years. I am on disability and my wife works full time. I worked as a Licensed Clinical Social Worker. I am giving up my license this year. Too expensive to maintain. I am politically involved as a chronic writer of emails to politicians local to national. I have also been involved in local actions to support causes. I also write an opinion column for our local newspaper. Oops, that reminds me, I have a column due tomorrow. I also am a birder (American-speak for birdwatcher). We just started a local birding group. I use my four-wheel scooter, power-assist wheelchair and van. I also garden. My wife bought me a beautiful raised bed garden bed last year. I was able to get some plants and seeds in. I am looking forward to a full season this year. I am an administrator on a Facebook site called "Don't Throw in the Trowel" for those gardeners who are also disabled." Look us up sometime. We have gardeners from both the northern and southern hemispheres. My wife and I have a great group of friends. None are disabled, but all are wonderfully supportive.

[JEM86]

Question

Hi Jim, Welcome. My granddaughter,my daughter and I all have MS. My mother, my brother and many aunts, uncles,cousins, nieces and nephews have CMT. I have never met or heard from another person outside my family with CMT

Hi Jeannef1. You have serious disorders all over your family. I am looking for a connection between CMT and MS. While that may not be, I see more written about CMT and MS co-occuring on CMT sites than here, although there is no representation they are related.
I will keep looking and also learning more about MS. Thank you all for being here.